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  • My story and some questions

    Hello all,

    Here's my story about my newly diagnosed TC.

    I'm a 27 years old French Canadian (which will explain some mistakes in my posts !), clinical hospital pharmacist.

    I did my testes exam each month and in December 2015, about 2 weeks after my exam, I noticed that my right testis was sensitive. I found a lump.

    Since I work in the hospital, I run to echography where tumor or infection were evoked. I was started on ciprofloxacin for orchitis, but I knew it wasn't that, cause it didn't hurt. Three days later, the echography was repeated and show that the mass has grown. So, the same evening, after the operative schedule ended, I was operated for right orchiectomy. All went well.

    One week later, I got ma path report. It shown 100 % pure embryonal carcinoma, no vascular invasion, no rete testis invasion. So, I was pT1. The tumor was 17 mm, which is small according to my oncologist.

    My serum tumor markers post-orchiectomy were :
    - AFP : normal
    - BHCG : 5 (it was 5 and 6 pre-orchiectomy)
    - LDH : normal

    Chest X-ray : normal

    CT scan of abdomen and pelvis : 2 left para-aortic RPLN of 8 and 9 mm. No other enlarged lymph node.

    So, my urologist stage me as Stage 2A.

    I was sceptical and I emailed Dr Einhorn, who told me I was Stage I because the lymph nodes don't fit the size criteria and they were on the left side and my tumor on the right side.

    I met my oncologist in Quebec City this week. He told me again Stage 2A but he ordered an other CT-scan 8 weeks after the first one to check the evolution of the lymph nodes, which is consistant with Canadian and European guidelines in the management of Stage 2A negative serum-tumor markers. I must also repeat those markers 1 month after the lask check.

    So, here are some of my questions :

    - I feel like I'm between stage I and II ! Those lymph nodes of 8 and 9 mm don't fulfill the size criteria but they certainly are suspicious. Also, those lymph nodes are on the contralateral side, but I know that lymph goes right to left and my oncologist said about 15 % of patients can have crossover. What do you think about those lymph nodes ?

    - Also, I found my BHCG to be slighty elevated. Laboratory normal is 0-5 in my hospital, but some references say inferior to 5 to be the normal. I also found that pure EC don't produce any markers at all. So, are the serum tumors markers useless with pure EC ? However, EC is a totipotent cell, so it can transform into another cell which can produced serum markers. What do you think about BHCG here ?

    - Finally, I expected my plan of treatment to be something like if my lymph node shrinkes, great ! I will still have stage 1 and about 45 % relapse rate. If the grew up fast and/or serum tumor markers become positive : chemotherapy. But, if they stay the same or grow very slowly, it can be teratoma, which don't produce also tumor markers. So, RPLND would be an option, but chances of relapse are 30 % with pure EC because the agressiveness of this form. Then, adjuvant chemotherapy will be an option to further reduce the risk. In Canada, we prefer to cure with a single modality of treatment, whenever possible, to limit the morbidity associated with both approaches. What are the chances of having pure EC transform into teratoma ?

    I'm kind of speculative on my treatment plan right now, because I don't know what will arrive, but I want to be ready to take decisions quickly with those different scenarios.

    So, what do you think about that ?

    Thanks a lot and sorry for the long post !

    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
    Hey JP, sorry to welcome you.

    It looks like you are clinical stage 1 right now like Einhorn says. EC sometimes releases tumor markers, sometimes does not. Looking at your tumor markers and your hospital normal values, you likely have a form of EC that does not release markers. Those lymph nodes will have to be watched though. If your tumor markers stay normal, I think you would be a good candidate for RPLND given the questionable lymph nodes. That way you will get a more thorough pathological staging done. It's very possible that you have pathological stage 2A, but also possible that you are stage 1. The only way to determine this is by an RPLND. I wouldn't do adjuvant chemo before RPLND in your case given the questionable lymph nodes. If those lymph nodes have cancer, only RPLND or 3 x BEP will do the trick.
    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


    • #3
      The beta-HCG of 6 before orchiectomy is slightly above normal. They'll have to check the tumor markers again and see if they stay in the normal range. If not, then chemo will be needed.
      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


      • #4
        Hi Jean-Philippe,

        I had pure EC with vascular and lymphatic invasion. My b-HCG before IO was 12, after IO negative. My CT after IO was negative. I decided to surveillance. I had my IO in 5/2015. Until today my markers were negative (in Dec 2014 I had one check false positive and the re-check was negative) and I also had my 2nd CT scan negative (same as the 1st). My 3rd scan will be in February.


        Also, I found my BHCG to be slighty elevated. Laboratory normal is 0-5 in my hospital, but some references say inferior to 5 to be the normal. I also found that pure EC don't produce any markers at all. So, are the serum tumors markers useless with pure EC ? However, EC is a totipotent cell, so it can transform into another cell which can produced serum markers. What do you think about BHCG here ?
        I am confused about the markers now and transformation into another cell. Does somebody have this experience?

        I will still have stage 1 and about 45 % relapse rate.
        45% relapse rate is if you have LVI, but you don't.

        But, if they stay the same or grow very slowly, it can be teratoma, which don't produce also tumor markers.
        Also interesting for me - what is a chance if I have negative markers, my nodes are not growing (...we can say yet...) that the EC transform into the teratoma?


        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


        • #5
          Hi, thanks for the answers.

          Marcopolo : the 45 % is based on experience in Princess Margaret Hospital in Toronto, one centre of excellence in Canada. In their 25 years cohort, they had (only !) 33 stage I that were pure EC with no vascular invasion. Of the 33, 15 have a relapse, for a rate of relapse of 45 %. It seems that pure EC without VI have a chance of relapse equal to that with an other NSGCT with VI.

          RJKD : adjuvant chemo is after surgery by definition.

          Thanks guys !
          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


          • #6
            Hi, that's interesting. what I've learned, EC with VI have has around 50%...tough life
            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


            • #7
              Hey JP,

              Adjuvant chemo can be right after orchiectomy for those with stage I or after primary RPLND for those with stage II.

              Marco, it's awesome how you've been able to escape any treatment with EC and LVI! Really awesome stuff! Very courageous to do surveillance but you're showing people that surveillance can be an excellent choice!

              With respect the EC changing to different forms, this is possible as it's a primitive cell. How likely...who knows?
              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


              • #8
                Congrats Marco ! I guess I would have chosen surveillance too in our cases, since about 50 % are spared any other therapy. Chemotherapy and RPLND are not risk-free. Primum non nocere !
                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


                • #9
                  thank you guys! It was very tough time and hard decision (especially if your fiancée is surgeon and urologist and oncologist are her schoolmates...can imagine what they preffered )

                  I still believe I will never need chemo treatment, but in case of things go wrong, I hope that only chemo will definitely beat it. Still long journey...
                  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
                    Hi Jean-Philippe,

                    Even though most agree that LVI+ in NSGCT is what determines high risk of relapse some studies has looked at embroynal predominance as a risk factor for relapse as well. The data you have from Princess Margaret is great and they are an awesome facility. However, I thought you might be interested in pulling this Danish study from 2014 as well. http://jco.ascopubs.org/content/32/34/3817 I think only one of the editorials you would have to pull. The study and other is available full-text already.

                    It is interesting in that for the first time they indicate rete testis involvement and just the presence, not predominance, of EC to increase risks. Obviously, more data is needed but I figured you could take it for what it is worth.

                    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

                    Comment


                    • #11
                      Thanks for the post Mike, I had seen this study in my researchs. It's very interesting that they included rete testis invasion. On the other hand, data of LVI (present or absent) was missing for more than 40 % of patients, which reduce the power of the results.

                      But surely it's a big database that can be useful !

                      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


                      • #12
                        It's really great to see all the different studies. When looking at my case, predominant Embryonal, LVI, rete testis invasion, I certainly looks like I was high risk! In hindsight, I probably would've done the primary RPLND 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


                        • #13
                          Originally posted by jpboucher View Post
                          Thanks for the post Mike, I had seen this study in my researchs. It's very interesting that they included rete testis invasion. On the other hand, data of LVI (present or absent) was missing for more than 40 % of patients, which reduce the power of the results.

                          But surely it's a big database that can be useful !

                          jp

                          Yeah, that is the big issue with trying to be absolute in the percentage chances. Denmark, SWENOTECA, UK, Germany, SGCCG, US, Canada, in all of the data collected there is always a part missing, rete testis or LVI or, not enough LVI patients so really it is just a look at stage Ia disease. The bigger numbers help but they are not perfect.

                          I had stage I seminoma and to me regardless if my risk of relapse was 20% or 8%, (based on the Risk Adapted approach) receiving adjuvant chemo or radiation wasn't worth it. Plus, I'm lazy so the less to do the better unless I absolutely had to do something.

                          That's just me and it is tough for everyone to come upon the option that is best for them.

                          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

                          Comment


                          • #14
                            Totally agree with you Mike. Even if I got 50 % risk of relapse and stage I, I take the bet that orchiectomy alone would cure one person on two and I would choose surveillance. Canadian guidelines recommend surveillance for all stage I patients, LVI or not, EC or not.

                            But someone else can have other interventions to lessen the risk of relapse and be absolutely right if they feel confortable to those options.

                            Hopefully those two lymph nodes will shrink at the next scan (March), so I don't get in a dilemma.
                            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


                            • #15
                              I've made the same choice (and that time I didn't know about this forum and I was just searching for details...). Fingers crossed!
                              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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