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Surveillance or BEPx2 (Pure Embryonal Carcinoma )

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  • Surveillance or BEPx2 (Pure Embryonal Carcinoma )

    After I did the orchiectomy of the right testis, the urologist told me that my case is pure EC, pT1. Since 7x%% of patient would not relapse, he suggested me to surveillance.
    Then I seek another advise from the oncologist, he told me 2x% of patient would relapse, recommended to do 2 cycles of BEP. Because surveillance means doing nothing, if the recurrence, I need to receive 4 cycles of BEP.

    - I am bit of not sure which treatment should I choice?

    - I know 2 cycles of BEP would cause infertility , would it cause any problem in erection? Would it affect the level of testosterone?
    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, AFP2 (normal7)
    17/10/17 CT scan

  • #2
    Originally posted by hinear View Post
    After I did the orchiectomy of the right testis, the urologist told me that my case is pure EC, pT1. Since 7x%% of patient would not relapse, he suggested me to surveillance.
    Then I seek another advise from the oncologist, he told me 2x% of patient would relapse, recommended to do 2 cycles of BEP. Because surveillance means doing nothing, if the recurrence, I need to receive 4 cycles of BEP.

    - I am bit of not sure which treatment should I choice?

    - I know 2 cycles of BEP would cause infertility , would it cause any problem in erection? Would it affect the level of testosterone?
    A few things in there is be cautious with. I would say if you were to have treatment now then 1xBEP should be enough. Similarly if you had to have treatment later on, in most cases 3xBEP would be enough.

    On top of that 2xBEP doesn't always cause infertility. In fact if you've gone and sperm banked and your sperm is fine now, the chances are you're fertility would be fine with 1xBEP for sure, and 3xBEP most likely. Most infertility is caused because people are infertile before chemo anyway. That's what my oncologist said anyway.

    100%EC has a bit more of a higher growth rate so maybe that's what he's saying 2xBEP but I would look into it and see what others in this forum have done.
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

    Comment


    • #3
      So there are 3 options for your situation of 100% pure EC, stage 1 without evidence of LVI:
      1) Surveillance
      2) 1x BEP (which it sounds like you were not informed about)
      3) 2x BEP

      I would say IF you are very concerned about about relapse and are not comfortable assuming the risk of possible needing 3 cycles in the future, then 1 cycle of BEP would be the best route to go. The reason is, that the second cycle of BEP in your case would have a marginal absolute risk reduction in reducing the risk of relapse. The 1st cycle would be the most important one. IF you have micrometastasis at this current time (meaning a few cancer cells that did escape but are too few in number to cause elevated tumor markers), then 1 cycle is usually plenty to take care of those cells for good. There is no objective right answer in your case and only you can decide what is the best option given your set of preferences. With that said, I think 2 cycles of BEP is overly aggressive given the absence of lymphovascular invasion and I would personally opt for 1x of BEP or surveillance.

      Comment


      • #4
        http://www.cancertherapyadvisor.com/...rticle/638983/

        ^I wanted to add that link as I think it is informative in your situation

        Comment


        • #5
          2 x BEP is way overkill. Your oncologist is wrong here. Maximum 1 x BEP. Surveillance is a good choice here too. RPLND also (but mostly only in the US).
          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


          • #6
            So i just finished 2xBEP 2 months ago for the same thing but i had LVI. My onc suggested 2xBEP just for the fact i had LVI. After asking here and looking up the nccn website 1x would probably been enough. I chose 2x because i got through the first round pretty easy. There was no way i was chosing surveillance . Hope that helps but there are way more people on here that know more than i do

            Comment


            • #7
              Thank you for all of your advise

              I am from Hong Kong, The doctor showed me his hospital guideline which recommended 2 cycles of BEP. After looking at the nccn guidelines and the comment in this forum, it seems that 1 cycle of BEP is enough.

              Survelliance does not mean that the patients are cured. There are some cancer cell hidden in the blood and waiting the time to relapse. If the patient did not relapse in 5-6 year, it does not mean that they won't relapse in 6-10 year. Will the cancer cell disappear over time? Will the cancer cell stay in my body forever. I am a bit worry that it will relapse when I am 60~70. By the time, 3-4 BEP chemo will definitely kill me.

              I have no LVI and my AFP is 4.0 ug/L( < 7 normal) before the surgery . After the surgery, My AFP is 2.0 ug/L. I am thinking that if my AFP rise back to 4.0, although it is stil normal, I will take 1 cycle of BEP as precaution. I am currently measuring the blood level per month, is that close enough to catch the rise of AFP?
              Last edited by hinear; 03-12-17, 01:29 AM.
              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, AFP2 (normal7)
              17/10/17 CT scan

              Comment


              • #8
                Hey,

                - After the 5 years of surveillance, you're considered cancer free or in remission. Some experts even advocate that the first 2 years are critical when it comes to pure EC. After 5 years of surveillance without relapse of your cancer, your greatest risk is to have an other one in the other testis, about 2 - 5 % of chance according to statistics.

                Orchiectomy is curative in many cases, in that sense it can remove all the cancer cells from your body. But those cancer cells might have escaped, so that's why surveillance protocols are important to detect that.

                - If you choose surveillance, you should get your markers drawn every 2 months.

                - If you do BEP, 1 cycle would be ok.

                Hope that helps,

                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


                • #9
                  Originally posted by hinear View Post
                  Thank you for all of your advise

                  I am from Hong Kong, The doctor showed me his hospital guideline which recommended 2 cycles of BEP. After looking at the nccn guidelines and the comment in this forum, it seems that 1 cycle of BEP is enough.

                  Survelliance does not mean that the patients are cured. There are some cancer cell hidden in the blood and waiting the time to relapse. If the patient did not relapse in 5-6 year, it does not mean that they won't relapse in 6-10 year. Will the cancer cell disappear over time? Will the cancer cell stay in my body forever. I am a bit worry that it will relapse when I am 60~70. By the time, 3-4 BEP chemo will definitely kill me.

                  I have no LVI and my AFP is 4.0 ug/L( < 7 normal) before the surgery . After the surgery, My AFP is 2.0 ug/L. I am thinking that if my AFP rise back to 4.0, although it is stil normal, I will take 1 cycle of BEP as precaution. I am currently measuring the blood level per month, is that close enough to catch the rise of AFP?

                  If your doctor has any objections to 1x BEP and that is indeed what you'd like to proceed with, do show him the NCCN guidelines just in case he has any concerns. Testicular cancer is very unique in the sense that WHEN relapses do occur, they occur early because testicular cancer is a fast progressing disease. When relapses occur, more than half will occur within the first year. The further out in time you go, the less chances of ever having a relapse. If after 5 years of monitoring, you haven't relapsed, the chances are you never will.

                  If cancer cells do escape there are a few possible outcomes. Those few cancer cells may grow and divide elsewhere (which would eventually be detected on your surveillance and then you'd have to do 3 cycles of BEP) or they may never find a suitable environment to grow and die off on their own (which we always hope happens of course). Therefore, don't worry about a relapse at 60-70. IF you do relapse ever, it will be almost certainly be within 5 years. If you are clear by 5 years, consider yourself fully cured and don't worry about it at all!

                  Always remember, cancer is a broad term that encompasses different diseases, and while other cancers may demonstrate late relapses 10-15 years later (or greater), testicular cancer does NOT. Keep us posted with what you choose to do and good luck!

                  Comment


                  • #10
                    Originally posted by SPX92 View Post
                    Always remember, cancer is a broad term that encompasses different diseases, and while other cancers may demonstrate late relapses 10-15 years later (or greater), testicular cancer does NOT.
                    First this is NOT true, while extremely rare, we have had guys on this forum that relapsed at 10+years, my onc also had a patient that relapsed in that time frame.
                    Survelliance does not mean that the patients are cured. There are some cancer cell hidden in the blood and waiting the time to relapse.
                    This is incorrect in many cases. Often the I/O is curative by itself & no cancer remains behind. Also surveillance is *not* "doing nothing". It is considered an active treatment program that will catch any recurrence very early so that 3xBEP can provide a cure.

                    I am a bit worry that it will relapse when I am 60~70. By the time, 3-4 BEP chemo will definitely kill me.
                    Actually, no, it won't. I was 55 when I had 3xBEP, We've had quite a few older guys get through it just fine.

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

                    Comment


                    • #11
                      I've seen non-seminoma relapse past 5 years on a couple of occasions. It's very unlikely with such a fast-grower such as Embryonal. Personally, after 2 years I would be relatively comfortable that the Embryonal component is gone. For teratoma though one will need the full 5 years of surveillance to ensure that it is not a left-over component.
                      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


                      • #12
                        Too bad, relapsed confirmed
                        Starting first cycle of BEP
                        Day4 of 1 cycles now
                        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, AFP2 (normal7)
                        17/10/17 CT scan

                        Comment


                        • #13
                          I'm sorry hinear. How was relapse detected? Tumor markers? Keep well.
                          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


                          • #14
                            Afp raise from 3 to 35 to 1xx
                            7 is normal
                            Then I do a Ct scan and observe a lymph node of 1.6 cm
                            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, AFP2 (normal7)
                            17/10/17 CT scan

                            Comment


                            • #15
                              Sorry to hear that hinear, but surveillance did it's job, and your current treatment should take care of it just fine. Please keep us posted as things progress.
                              Dave
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment

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