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  • Pure embryonal carcinoma

    Hello all,

    I have noticed that many guys here have presented recently with pure EC, which is surprising since the low prevalence of this kind of tumor.

    I have gathered some data on pure EC for those guys here who have this form of TC. Sorry for the long post, guys ! When I came to this forum, I had much questions and I found answers for some during these last months. I share you today the results of these long searches.

    TC is treated according to stage, but clinicians must acknowledge that the orchiectomy specimen contains precious informations. Pure EC acts quite differently than other NSGCT.

    For guys who have (or had !) pure EC, you can post here your story or other things about pure EC if you want, so we can discuss of this without invading personal post. I’m sure future forum members will be happy to have this.

    So, here it is :

    Pure EC :
    • About 2 – 4 % of all TC
    • Usually do not produce AFP
    • Modest elevation in serum bHCG
    • High propensity to invade (LVI is common)
    • Agressive germ cell tumor
    • Most undifferentiated cell : pluripotent, may transform in other specialized cells (choriocarcinoma, yolk sac or teratoma)

    Clinical data :


    I try to found the most pertinent clinical data on pure EC. Data is not exhaustive.

    Princess Margaret Hospital in Toronto (Canada)
    https://www.ncbi.nlm.nih.gov/pubmed/21190791
    • Stage I NSGCT
    • All treated with surveillance (as recommended by Canadian guidelines)
    • 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 %)
    • Relapses mostly retroperitoneal and in the good prognosis group (personal communication with lead author) for pure EC
    • Other results presented are pooled, so not specific to pure EC.

    Case report (Netherlands)
    https://www.ncbi.nlm.nih.gov/pubmed/18307023
    • Case report of a 19 YO with stage 1B pure EC
    • Treated with surveillance after orchiectomy
    • Relapsed more than 1 year after orchiectomy with retroperitoneal mature teratoma (1.8 x 1.4 cm)
    • RPLND performed
    • Illustrates that pure EC may transform to teratoma WITHOUT chemotherapy (first case report of this)

    MSK in New York (USA)
    • 45 patients with pure EC
    • 29 patients with LVI
    • 26 patients were clinical stage I ; 17 stage IIA ; 2 stage IIB
    • All initially managed by RPLND
    • 76 % of patients have retroperitoneal disease at diagnosis: 76 % with LVI ; 75 % without LVI
      • 7 patients pN0 (no metastasis)
      • 10 patients pN1
      • 24 patients pN2/N3
    • Retroperitoneal pathology
      • Pure EC in 76 % patients
      • Pure yolk sac in 1 patient
      • Mixed NSGCT in 21 % patients with 3/7 patients with teratomatous elements
    • pN0 : 0 patient relapsed after RPLND
    • pN1 : 1/9 patient relapsed after RPLND
    • pN2/N3 : 3/24 patients relapsed after RPLND

    Testicular Intergroup Study
    http://www.ncbi.nlm.nih.gov/pubmed/1309382
    • 69 % of patients with clinical stage I pure EC have retroperitoneal pathologic disease at diagnosis

    ASCO meeting
    Princess Margaret Hospital in Toronto (Canada)
    http://meeting.ascopubs.org/cgi/cont...33/7_suppl/377
    • About 90 % of patients achieve complete response with chemotherapy if pure EC in the orchiectomy specimen
    • Similar to data from MSKCC (about 7 % teratoma if pure EC in the orchiectomy specimen)

    Finally, sorry for some English mistakes (still trying to improve !).

    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.

  • #2
    This is really great information JP. I've been seeing many cases of pure EC here as well. This will be very helpful for people in the future.
    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


    • #3
      It is great info. Too bad I am in the pure Seminoma gang.

      Probably ought to make this a sticky.

      Also; it would be nice to have a thread/sticky like this for each of the pure histologies (pure Seminoma, pure Chorio, etc).

      Just my 2 cents.

      - Matt
      March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
      March 13th: Left IO 100% Classic Seminoma
      6.3 x 5.1 x 3.8 cm, no invasion of anything
      LDH never fully normalized
      Stage: IS
      Watchful Waiting
      May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
      May 12th: started 3xBEP
      Neupogen during Cycle 2 and 3
      July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
      August 4th: Post Chemo CT/PET scan
      September 4th: Port removed
      January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !

      Comment


      • #4
        Thanks for that info JP
        Husband dx Jan 27 2016
        Nonseminoma, Pure Emryonal, LVI
        Stage 1B negative margins LDH 178 AFP 4.0 hcg <1
        All CT Scan clear
        hcg was slightly elevated - turned out to be stressed pituitary gland - leveled itself off after about 5 weeks.
        Starting 1xBEP on 4/25/16

        Comment


        • #5
          JP, thanks for this post.

          I am from Slovakia and I had EC (LVI confirmed, pre-IO B-HCG and LDH slightly elevated, stage 1b), BEPx2 suggested (adjuvant). Choose surveillance (oncologist and urologist not very happy with that) - later confirmed by Dr. Einhorn that surveillance is also OK for my case.

          5/2015 - IO
          5/2015 until 4/2016 - negative markers
          2/2016 - 2 border lymph nodes (12x8 and 13x9 mm)
          5/2016 - next check

          I can say that I am ONE year with negative markers, but with 2 slightly enlarged nodes.

          Not sure, what will be next - if the nodes will be enlarged more and my markers negative...

          Any similar story would help. Thanks!
          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


          • #6
            I'm a bit surprised by the response to that CT - I'd have thought that with two nodes > 1cm, you'd be getting a much more regular checkup. Some people have had chemo straight away on the basis of such sized nodes - and negative markers doesn't necessarily mean good news, unfortunately.

            Good luck with the upcoming CT, anyway - I hope the nodes are smaller, but if not then at the very least you should ensure you have another scan before too long.

            - T
            30 Jul 14: Discovered lump
            31 Jul 14: GP referral to specialist
            4 Aug 14: Clinical diagnosis of tumour, blood samples taken, CT scans, USS (confirming ~2cm tumour)
            8 Aug 14: Left radical orchidectomy (plus test results back: CT normal, no mets; blood markers slightly elevated: AFP 14.16, HCG 4.9, LDH 149)
            29 Aug 14: Pathology results: Stage 1A Mixed Non-Seminomatous Germ Cell Tumour (composition: Yolk-sac Tumour and Mature Teratoma)

            24 Sep 14: Started precautionary adjuvant 1xBEP
            23 Oct 14: All clear; on surveillance

            Comment


            • #7
              Originally posted by marcopolo View Post
              I can say that I am ONE year with negative markers, but with 2 slightly enlarged nodes.

              Not sure, what will be next - if the nodes will be enlarged more and my markers negative...
              Well, your pre I/O markers were slightly elevated, so normally that means any relapse would do the same, but it's not 100% .

              What did your doc say about the nodes? I'm guessing he wants another scan to confirm that they are growing, but seems like 4 months is a bit long to wait to me.

              Certainly if they are larger, you will need 3xBEP, negative markers are meaningless at that point.

              Dave

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

              Comment


              • #8
                I never knew that EC could transform into choriocarcinoma and yollk sac. I wouldn't be surprised if mine started as 100% EC and transformed because I caught it relatively late.

                Originally posted by Davepet View Post

                Certainly if they are larger, you will need 3xBEP, negative markers are meaningless at that point.

                Dave
                There is a *small* chance he has teratoma there rather than EC because of the slow growth and negative markers. I'd be curious if a center of excellence would recommend RPLND before chemo in this situation or not.
                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 - 9/18/15: 4xEP
                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!
                5/10/17 all clears up to this date!

                Comment


                • #9
                  Hi Dave,

                  Originally posted by Davepet View Post

                  Well, your pre I/O markers were slightly elevated, so normally that means any relapse would do the same, but it's not 100% .

                  What did your doc say about the nodes? I'm guessing he wants another scan to confirm that they are growing, but seems like 4 months is a bit long to wait to me.
                  Yes, my markers were elevated so I was wondering if I had them elevated before I/O, they will be the indicator of the later relapse. My oncologist said - if markers negative, then next CT will be 4 months later. But I searched the guideliness and should be 6-8 weeks later - so nowadays is 8 weeks and I will ask for my next CT sooner.

                  Dr. Einhorn said - if markers negative, this means nothing and continue with surveillance, But I havenīt asked him if markers negative and nodes are growing.

                  Hi biwi,

                  There is a *small* chance he has teratoma there rather than EC because of the slow growth and negative markers. I'd be curious if a center of excellence would recommend RPLND before chemo in this situation or not.


                  I have searched for guidelines and found this on european urology website. If nodes are growing and tumor markers are negative - RPLDN is the first treatment. So it will be interesting now, becasue if the nodes will be enlarged, I guess my oncologist will suggest BEPx3, but then if the residuall mass will remain - the RPLDN will be very complicated. And finally, I am sure that we donīt have well experienced surgeron in the country...

                  7.4.2.2.Stage IIA/B non-seminoma

                  There is a general consensus that treatment should start with initial chemotherapy in all advanced cases of NSGCT except for stage IIa NSGCT disease and pure teratoma without elevated tumour markers, which can be managed by primary RPLND or surveillance to clarify stage [111,129].
                  If surveillance is chosen, one follow-up evaluation after 6 weeks is indicated to document whether the lesion is growing, remaining stable or shrinking. A shrinking lesion is probably non-malignant in origin and should be observed further. A stable or growing lesion indicates either teratoma or an undifferentiated malignant tumour. If the lesion is growing without a corresponding increase in the tumour markers AFP or beta-hCG, RPLND represents the first treatment option and should be performed by an experienced surgeon because of suspected viable disease or teratoma [129]. Patients with a growing lesion and a concomitant increase in the tumour markers AFP or beta-hCG require primary chemotherapy with BEP according to the treatment algorithm for patients with metastatic disease and IGCCCG recommendations
                  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


                  • #10
                    Originally posted by jpboucher View Post
                    Hello all,

                    ASCO meeting
                    Princess Margaret Hospital in Toronto (Canada)
                    http://meeting.ascopubs.org/cgi/cont...33/7_suppl/377
                    • About 90 % of patients achieve complete response with chemotherapy if pure EC in the orchiectomy specimen
                    • Similar to data from MSKCC (about 7 % teratoma if pure EC in the orchiectomy specimen)

                    Thanks for this jpboucher. I was diagnosed with pure EC with extensive LVI, tumors in lymph nodes and lungs based on CT scan. I am in day 2 of round 2 of 3xBEP.

                    My doctor (Dr. Shi-Ming Tu at MD Anderson) said that 10% of (his?) patients with pure EC need the RPLND, which lines up nicely with your findings from Princess Margaret Hospital.

                    I'm curious from this forum, are there any guys with pure EC who can comment on their stories...
                    - Did you need RPLND after chemo? Hopefully based on the statistics most of you did not.
                    - Are there any special complications of doing the surgery after chemo? I thought I read somewhere that the surgery can be more difficult b/c the lymph nodes are destroyed by chemo.
                    - Also, is this the kind of thing where the initial CT after chemo might be clear but enlarging nodes/high tumor markers might show up later (weeks/months)?

                    Thanks.
                    Mar 23, 2016 - Left I/O, tumor 4.0 x 3.5 x 2.6 cm
                    Embryonal carcinoma, extensive lymph-vascular invasion, pT2
                    Mar 28, 2016 - CT scan, 5 lower lobe pulmonary nodules, largest 1.8 cm, retroperitoneal adenopathy
                    Apr 4, 2016 - met with oncologist, cancer staged at IIIa
                    Apr 11, 2016 - started 3 x BEP
                    Jun 13, 2016 - finished chemo!
                    Nov 8, 2016 - 4 month checkup, tumors shrank significantly, bloodwork normal

                    Comment


                    • #11
                      Originally posted by jdub View Post

                      - Also, is this the kind of thing where the initial CT after chemo might be clear but enlarging nodes/high tumor markers might show up later (weeks/months)?

                      Thanks.
                      Yes. I had predominantly (although not pure) EC and my lymph nodes went to "normal" 1.0cm after chemo. 6 months later i did have an enlarging lymph node with negative markers and subsequent RPLND which found terratoma.
                      Last edited by biwi; 05-05-16, 07:58 AM.
                      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 - 9/18/15: 4xEP
                      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!
                      5/10/17 all clears up to this date!

                      Comment


                      • #12
                        I had 100% EC, diagnosed in July 2012. By the time I caught it, I had two enlarged lymph nodes at 1.6 and 1.8 cm as well as something tiny starting on my lung at 4.3 mm. Dr Standler at the University of Chicago suggested to start with 4xEP but I did get a second opinion from Dr Einhorn who suggested 3xBEP. Dr Stadler gave me the choice and I decided to do the BEP instead of EP because it was slightly more effective and I was willing to take the pulmonary risk. The chemo did the trick and have been all clear ever since. I never had a need to have a RPLND (thank goodness).
                        Tom

                        6/28/12 - Diagnosed
                        7/3/12 - Left I/O
                        7/10/12 - 100% EC Stage IIa
                        7/31/12 - 3xBEP Begin
                        10/9/12 - All Clear

                        Comment


                        • #13
                          Originally posted by jdub View Post

                          Thanks for this jpboucher. I was diagnosed with pure EC with extensive LVI, tumors in lymph nodes and lungs based on CT scan. I am in day 2 of round 2 of 3xBEP.

                          My doctor (Dr. Shi-Ming Tu at MD Anderson) said that 10% of (his?) patients with pure EC need the RPLND, which lines up nicely with your findings from Princess Margaret Hospital.

                          I'm curious from this forum, are there any guys with pure EC who can comment on their stories...
                          - Did you need RPLND after chemo? Hopefully based on the statistics most of you did not.
                          - Are there any special complications of doing the surgery after chemo? I thought I read somewhere that the surgery can be more difficult b/c the lymph nodes are destroyed by chemo.
                          - Also, is this the kind of thing where the initial CT after chemo might be clear but enlarging nodes/high tumor markers might show up later (weeks/months)?

                          Thanks.
                          Hey jdub,

                          - Seems that Dr Tu knows right the medical literature about pure EC (or he have a very large volume of pure EC patients !) !
                          - PC-RPLND is more complicated than primary PRLND because tissues are scar and fibrotic after chemo and are more difficult to "cut". The anesthesist must also known if you have received bleomycin since it will have to manage pulmonary/liquid volums precisely during surgery. If you might turn in the 10 % of patients needing PC-RPLND, go in a center of excellence !
                          - Growing tumors and negative tumor markers after complete response to chemo are sign of teratoma, which may take months/years to grow. Sometimes, pure EC cells can transform into teratoma cells, which are less prone to division, hence the longer time of detection. RPLND represent the optimal treatment. If tumor markers are positive, then the possibility of a viable cancer is again and salvage-chemo will be needed.

                          Hopefully, you have 90 % to completely cure this and never look back !

                          jp
                          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


                          • #14
                            Originally posted by jdub View Post
                            I'm curious from this forum, are there any guys with pure EC who can comment on their stories...
                            My second was 100% EC. I went the surveillance route and five months later needing 3 x BEP. Post chemo, my first scan showed a lymph node that was > 1cm, however by my next follow-up it had gone. So no RPLND for me.

                            DZ

                            Jan 2009: RHS (Seminoma) & RT
                            Mar 2010: LHS (Embryonal Carcinoma)
                            Sep 2010: Relapse & 3 x BEP
                            Mar 2015: Five years "nut free"
                            http://doublezeroami.blogspot.com

                            Comment


                            • #15
                              My son has 100% EC, left I/O on 3/22/16, stage IB. (Family history (Uncle) 95% EC diagnosed 1997, treated at IU BEPx2. Relapsed 10 yrs later, RPLND and BEPx4). Given choice of BEPx2 or RPLND nerve sparing. 4/13/16 RPLND.OU Medical stage IIb (5 nodes 100% EC). AFP, bHCG normal. LDH slightly elevated, post RPLND and returned to normal. BEPx2 adjuvant scheduled (after RPLND recovery). 6/13/15 baseline CT chest and pelvic areas, tumor markers slightly elevated, 9 spots on lungs (<9 mm). Began chemo 6/20/16 EPx4 - BLEOMYCIN DRUG SHORTAGE.

                              Comment

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