Pure embryonal carcinoma

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  • mcintoda
    Registered User
    • Nov 2016
    • 149

    #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
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    06DEC16 - CT scan clear
    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

    • RJKD
      Registered User
      • Jul 2015
      • 740

      #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).
      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

      • mcintoda
        Registered User
        • Nov 2016
        • 149

        #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
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        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

        • jpboucher
          Registered User
          • Jan 2016
          • 302

          #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.
          June 2017 : Serum tumor markers normal. 4 mm (from 7 mm) lymph node. Surveillance continues.

          Comment

          • RJKD
            Registered User
            • Jul 2015
            • 740

            #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.
            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

            • mcintoda
              Registered User
              • Nov 2016
              • 149

              #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
              27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
              06DEC16 - CT scan clear
              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

              • RJKD
                Registered User
                • Jul 2015
                • 740

                #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.
                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

                • mcintoda
                  Registered User
                  • Nov 2016
                  • 149

                  #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
                  27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                  06DEC16 - CT scan clear
                  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

                  • Trekga
                    Registered User
                    • Jan 2017
                    • 882

                    #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!
                    Son Grant
                    dx 12/21/16 at age 17

                    BEP x3
                    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                    Comment

                    • RJKD
                      Registered User
                      • Jul 2015
                      • 740

                      #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.
                      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

                      • Davepet
                        Registered User
                        • Mar 2010
                        • 4459

                        #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

                        • mcintoda
                          Registered User
                          • Nov 2016
                          • 149

                          #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
                          27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                          06DEC16 - CT scan clear
                          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

                          • hinear
                            Registered User
                            • Feb 2017
                            • 31

                            #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)

                            28/07/17 AFP 35 (normal 7), relapsed confirmed
                            04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
                            10/08/17 Start 3 BEP, AFP201 (normal 7)
                            06/10/17 End of 3 BEP, AFP3 (normal7)
                            17/10/17 CT scan
                            27/10/17 Prev left para-aortic lymph node not seen. AFP2(normal 7), B-HCG <2, LDH 208( normal 118-220)

                            Comment

                            • marcopolo
                              Registered User
                              • Oct 2015
                              • 98

                              #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 U/l, AFP = 6.14 ug/l, LDH = 9,
                              05/05/2015 – I/O (100% Embryonal carcinoma, LVI presented)
                              05/06/2015 – post-operative CT scan negative, 2xBEP suggested
                              6/2015 - surveillance (my decision)
                              7/2015, 9/2015 - markers negative
                              9/2015 - 2nd CT negative, 6 months later CT re-checked and found one node which measured 16x12mm
                              10/2015, 1/2016, 2/2016 - markers negative
                              2/2016 - 3rd CT scan - 2 nodes (border) - 12x8mm, 13x9mm
                              3/2016, 5/2016, 8/2016, 11/2016, 2/2017 - markers negative
                              2/2017 - 4th CT scan - 11x7mm (was 12x8mm) and 8x5mm (was 16x12mm)
                              7/2017 - markers negative

                              Comment

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