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Just diagnosed Pure Embryonal Carcinoma

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  • #16
    Dr E is spot-on like always here. The 2 x BEP suggestion is ridiculous. I read that last night and I was going to write here but then fell asleep. I would personally do surveillance given the 3mm lung nodule is a bit of an unknown here. But it's highly likely nothing, but if it is something then an RPLND would be a bad move. If it wasn't for that lung nodule, I would do an RPLND to do my best to avoid chemo.
    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

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    • #17
      RKJDIm scheduled to get another opinion from another oncologist tomorrow(one that deals with more TC). Im going to bring up what Dr. Einhorn has told me with this other oncologist. Im just glad I found this forum. I feel like I have learned more about my condition than some of these other oncologists. Thanks for the reply.

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      • #18
        Originally posted by birby84 View Post
        RKJD—I’m scheduled to get another opinion from another oncologist tomorrow(one that deals with more TC). I’m going to bring up what Dr. Einhorn has told me with this other oncologist. I’m just glad I found this forum. I feel like I have learned more about my condition than some of these other oncologists. Thanks for the reply.

        Get the other oncologists opinion, but don't tell him Dr E's opinion until after. That way you can get a fresh set of eyes on your data.

        Because you have EC, lung nodules can sometimes mean cancer spread. EC is super tricky like that. I actually only see one choice for you. 1 x BEP is not a good option because if that nodule is something then 1 x BEP is not likely enough treatment. RPLND is not a good option as if that lung nodule is something then the RPLND would've been useless. Surveillance is the only option for you.
        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

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        • #19
          As always, RJKD will not lead you astray (he was super helpful to me and generally awesome when I had these decisions to make), but I would want to inquire about re-checking the chest CT. You're going to want to keep a close eye on that nodule anyway, since EC can grow and spread quick. I think these nodules can be common, also depending on the fungi that live where you live, and often clear up quickly. If you re-check the lungs soon, say on your first test of a surveillance protocol, and you see that the nodule is gone, then you suddenly get options of RPLND or 1xBEP. The timing here is a bit delicate, because for either 1xBEP or RPLND you would want to do soon, say within 2 months after orchiectomy (I've gotten different bounds from different docs here). Probably it's wise to do surveillance, especially if that's what Dr. E suggests, I just want to point out that you might get those other options back if the nodule clears, and I think they sometimes do!
          11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
          12/8/16 Diagnosed with TC in left testicle.
          12/9/16 Left I/O.
          1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
          1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
          2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

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          • #20
            Originally posted by RJKD View Post
            Because you have EC, lung nodules can sometimes mean cancer spread. EC is super tricky like that. I actually only see one choice for you. 1 x BEP is not a good option because if that nodule is something then 1 x BEP is not likely enough treatment. RPLND is not a good option as if that lung nodule is something then the RPLND would've been useless. Surveillance is the only option for you.
            I agree with the above. As Dr. Einhorn mentioned that the 3 mm is probably nothing (if it is something then BEPx3 would be needed not x1 or x2). Unfortunately, the only way to know for sure is if it grows (which then full dose BEP would be needed). BEPx2 now is not really recommended by any experts that I know and even if using BEPx1 and the lung is an issue then it is gross under-treatment that could muddy the waters. An RPLND if it is something in the lungs would be futile as well.

            If it were me I think I would go with surveillance knowing that keeping an eye on the lung would be the driving force of the need for full-dose chemotherapy and even if it is negative that I would have a 50% chance of relapse given the EC and vascular invasion. But if I did relapse then I would know for sure that chemo was necessary and I wasn;t confusing things with potentially under-treatment.

            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

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            • #21
              With going under surveillance, would I need to go under surveillance every month, rather than every 2 to 3 months?

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              • #22
                Originally posted by birby84 View Post
                With going under surveillance, would I need to go under surveillance every month, rather than every 2 to 3 months?

                Surveillance protocols differ from lace to place and MD to MD. However, the NCCN Guidelines for example, would be tumor markers every 2 months with CT scan every 4 months in the first year. I do not think that monthly check ups would be needed but again, it depends on the MD I suppose. The NCCN Guidelines are accessible at: https://www.nccn.org/professionals/p...asp#testicular

                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


                • #23
                  I doubt having a CT scan every month of your lung is a good idea. Perhaps it can be done after 1 month to check if something has changed, but then the schedule should be rediscussed. While on surveillance (at least in my case) I had CT scan at months 0-6-12 etc. and lung x-Ray at months 3-9 etc. Since you need to monitor a small nodule on your lung, perhaps x-Ray might not be considered good enough. You can inquiry about the possibility of low-dose CT scan to the lungs to reduce the amount of radiation while increasing the frequency?

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                  • #24
                    I met with the other oncologist today. I felt he was much more knowledgeable in the TC realm than the first one. He explained in more detail the options I had. He explained about RPNLD and recommended to find someone who has done it many times. He says the Memphis area doesn’t really have anybody that does them more than 13 a year. If I were to do it, he suggested to go up to IU to get it done, which is about a good 8 hour drive. I’ll keep RPNLD on the back burner. He says I’m a good candidate for adjuvant chemo 1xBEP over the 2xBEP like the other oncologist suggested. My blood markers were all normal. He thinks the spot on the lung wasn’t really anything to be concerned about given my AFP was 3 and HCG was
                    Last edited by birby84; 10-23-17, 06:49 PM.

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                    • #25
                      Im starting my first day of 1xBEP today, wish me luck.

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                      • #26
                        Wishing you the best as you begin your 5 day week.
                        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.
                        Grant is enjoying his senior year in High School Cancer Free!

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