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  • #16
    My tumor size was 4.6 cm at it's largest. Would this make a huge difference. Also, I noticed tingling in my breasts a good 6 weeks before I noticed swelling in testicle. I guess it doesn't matter as I was still classified as stage 1. When does recurrence happen, I have heard median range is 4-7 months, and 80% of time within year 1. Is the recurrences in year 2 because of possible seminoma in tumor?

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    • #17
      Originally posted by sjsamgolf
      Have you ever heard of long term side effects from 1XBEP. Once again thanks for the replies.
      I suspect you won't find information about long term side effects from 1xBEP, because it isn't a standard treatment.
      Scott
      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

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      • #18
        For some reason I just feel why not try and keep the TC is stage 1 if it recurs it will be stage 2 with much more treatment. I don't know. Anyone know of people recurring with little EC and no VI?

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        • #19
          Originally posted by sjsamgolf
          Anyone know of people recurring with little EC and no VI?
          No - but I guess they are out there since "only" 80% stay clear.
          I wonder if you could share Dr. Einhorns mail with us? It sounds interesting that he's about to present a course of 1xBEP.

          Best wishes
          Jens
          Embryonal carcinoma, stage II,
          3 x BEP, apr - june 2005
          Surveillance

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          • #20
            Does anyone know if teratoma will show in tumor markers?

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            • #21
              Elevated AFP is associated with yolk sac and embryonal carcinoma.
              Elevated hCG is associated with choriocarcinoma and embryonal carcinoma, and sometimes with seminoma.
              There is no marker for teratoma.
              Scott
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

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              • #22
                My tumor markers were elevated 350 AFP before surgery. My urologist said this can actually be a good sign as we will know immediately if it spread. Is this correct. The cells that are microscopic will contain same germ cells as original tumor, correct? The dicussion with 1XBEP versus 2xBEP is that 1 cycle has the same effect as 2 according to the study Dr. Einhorn is presenting in June. I know the majority of people on this site support surveillance, I guess which is a viable solution. My philosphy is as follows and Dr. Einhorn confirmed this my tumor is 50% teratoma in the unlikelyhood it spreads I will need a RPLND surgery after chemotherapy which I hear is worse than the regular one. Dr. said if I took chemotherapy now it will stop the teratoma from growing as teratoma will not grow w/o active cancer. If I stop it now it shoulkd never grow to size where it have to be removed. Am I wrong in assuming this? Is it possible if I go on surveillance that if it did recur I will just need the 3XBEP? Any thought to this? Sorry for the long response.

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                • #23
                  Wow, is it really true that teratoma will not grow without active cancer? Dianne
                  Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                  Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

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                  • #24
                    Originally posted by sjsamgolf
                    Dr. said if I took chemotherapy now it will stop the teratoma from growing as teratoma will not grow w/o active cancer. If I stop it now it shoulkd never grow to size where it have to be removed. Am I wrong in assuming this?
                    No, this is incorrect.
                    Scott
                    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

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                    • #25
                      Originally posted by sjsamgolf
                      It just seems to me that a vast majority of people relapse, why not do something to avoid the relapse.
                      70% of men with stage I non-seminoma are cured by the orchiectomy alone and do not have a recurrence.
                      Scott
                      right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

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                      • #26
                        Jason, what treatment is right for you will come down to your personal decision. If you can come to terms with the idea, I still believe surveillance is your best choice. Otherwise, you should consider having an expert perform RPLND surgery as soon as possible. I still suggest holding off on any chemotherapy until you know for certain that you need it.
                        Scott
                        right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

                        Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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                        • #27
                          Metastases will be of the same making as the original tumor. However, the cells may differentiate as time passes.
                          Embryonal carcinoma cells are like very early fetus cells, not yet specialized, and they may differentiate into yolk sac, chorio and teratoma, as they grow and divide.
                          What it means is that the cells begin to take shape and function. A thing to note is that undifferentiated cells are generally more maligne (fast growing and spreading) than differentiated ones. Choriocarcinoma is, however, quite the opposite. It grows very fast.
                          Focusing on teratoma, it may grow into immature teratoma that can develop further into mature teratoma.
                          Whereas other cell types are susceptible to chemo, teratoma is unfortunately not, or at least not enough... It's mainly because it grows very slowly. (Fast growing cancers reacts better to chemo than slow ones.)
                          So, if you have a lot of teratoma in the early stage, you actually have a benign condition that may turn into a malign one.

                          Mom: Immature teratoma will grow some without viable cancer, but it will not spread.

                          After cisplatin-based chemotherapy there may be residual masses consisting mainly of teratoma (the other parts have been killed).
                          If they become cystic (mature teratoma), it's a sign that they contain viable cancer afterall. They need to come out.
                          It's my understanding that removal of residual masses are not nearly as complicated as a full template RPLND.


                          Now, to the BEP matter.
                          1xBEP sounds interesting and makes sence. Early TC is probably very "killable".
                          2xBEP is not used very often, it's simply not enough to take care of metastases and I read you like Dr. Einhorn says it's overkill for early stages.
                          3xBEP works - is has longterm effects but generally not to bad. But don't try this at home and only get it if needed.

                          I think you should get into a clinical trial if you want to try "new approaches". It will help the guys that (unfortunately) will follow us better.

                          Best wishes
                          Jens
                          Embryonal carcinoma, stage II,
                          3 x BEP, apr - june 2005
                          Surveillance

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                          • #28
                            Originally posted by Jens
                            I think you should get into a clinical trial if you want to try "new approaches". It will help the guys that (unfortunately) will follow us better.
                            Excellent advice, Jens.
                            Scott
                            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

                            Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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                            • #29
                              There is considerable confusion w/ regards to teratoma.

                              Note that there is (i) immature teratoma, and (ii) mature teratoma. Also note that that immature teratoma can transform into chemotherapy-induced mature teratoma. And while mature teratoma is rigorously benign, it has the potential to evolve into malignant neoplasms, none of which you want to become acquainted with because all of them are really bad news.

                              Originally posted by sjsamgolf
                              Dr. said if I took chemotherapy now it will stop the teratoma from growing as teratoma will not grow w/o active cancer. If I stop it now it shoulkd never grow to size where it have to be removed. Am I wrong in assuming this? Is it possible if I go on surveillance that if it did recur I will just need the 3XBEP? Any thought to this? Sorry for the long response.

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