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  • Treatment Questions

    Hi, this is my first time to post here. Just wanted to get some input from you all about what course I should take. I had my I/O on 7/31 and am trying to figure out where to go from here. Here is my history- Diagnosis on 7/27/07, left I/O 7/31/07, Pathology- NSGCT, Seminoma w/ small choriocarcinoma. Pre-I/O my HCG was 97 and had returned to normal level within a week after surgery. Considered to be good-risk Stage I. I was living in the mid-west at the time and decided to move back home to Alabama to get better quality care and be closer to friends and family. I just met with my new Urologist yesterday and went over my options. My previous doctors recommended surveillance. An oncologist friend I have talked to feels that chemo is the best choice. My new Urologist says I should do surveillance or RPLND. I had previously felt that surveillance was not a good idea but now I am starting to lean toward choosing surveillance. I am going to talk to my doc next week after he has looked at my path slides and C/T images (it took a while to get them from my old Dr.). Any questions or input?
    Dx- 7/27/07, Left I/O- 7/31/07, Seminoma w/ small Choriocarcinoma, Stage I, further treatment-??

  • #2
    alamike, this is a very difficult choice to make and my heart goes out to you for even having to make it. I think Scott has the guidelines for treatment options and I am sure he will find you here and post them. My gut says not to do surveillance because of the small choriocarcinoma. Keep in mind I am not a doctor. I just feel that TC can be agressive and that most people should be agressive in return. Maybe the RPLND could spare you the effects of chemo. I am sure others will come to support you and offer you a wide range of advice. I am sorry that you have to be here in this fight and I wish you all the best. Let us know what you decide and how we can support you.

    M.
    Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
    Current DVT
    Current testosterone replacement therapy, Testim.

    "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

    Comment


    • #3
      If your blood work is normal and the x-rays and slides show no spread surveillance is a real. The chorio is a concern that needs to be discussed with your new doctor but my choice would be surveillance. The problem as I see it with the RPLND is that chorio is one of the forms of tc that can skip the nodes so an RPLND may not be a cure. This will come down to a matter of personel choice.
      Last edited by dadmo; 09-07-07, 12:04 PM.
      Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

      Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

      Comment


      • #4
        Hey Mike,

        Other people will be able to give you much more advice then I can since I'm not very familiar with the treatment of any amount of choriocarcinoma, but since a urologist suggested RPLND, he is most likely looking at your case as a nonseminoma tumor (I don't believe RPLND is suggested for a seminoma). When nonseminoma is the case, many people go with RPLND right off the bat because 1: it can save you unnecessary chemo and 2: you have a better chance at keeping fertility if you have your RPLND pre-chemo as opposed to post-chemo (if chemo is needed) It is much harder to do a "nerve sparing RPLND" (to save fertility) post chemo from what I've read.

        I hope this has helped a little. Did you have CT scans done yet? They may help add more light to the situation.

        Bobby
        4/26/07 - mass confirmed w/ no elevated markers
        4/27/07 - left I/O
        5/2/07 - Dx: 100% seminoma stage 1A
        Surveillance: CT/blood (6 month cycle)
        4/27/13 - 6 years cancer free!

        Comment


        • #5


          Here is the link. It "looks" like treatment for nonseminoma (which is my understanding of what you have) would be RPLND or Surveillance
          (in compliant patients). I am unsure what compliant patients means? Maybe someone else will jump in and explain what this means.

          I hope the link is helpful.
          Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
          Current DVT
          Current testosterone replacement therapy, Testim.

          "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

          Comment


          • #6
            Margaret:
            In this case all they mean by compliant is that they are sure you will do the follow-ups.
            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

            Comment


            • #7
              alamike:
              Man I forget to say one really important thing. Welcome.
              Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

              Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

              Comment


              • #8
                Originally posted by dadmo
                Margaret:
                In this case all they mean by compliant is that they are sure you will do the follow-ups.
                Sorry, I feel stupid. That makes perfect sense!
                Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
                Current DVT
                Current testosterone replacement therapy, Testim.

                "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

                Comment


                • #9
                  I had C/T done one week post-I/O and it looked ok, no problems. My new doc has not seen the images yet but I assume he will come to the same conclusion. I had blood work and chest X-ray done yesterday and have not heard the results. This is considered a non-seminoma and is treated as such. It does seem tricky though. It is 99% seminoma but it is that 1% that changes everything. I have not come across a similar pathology. Has anyone else?
                  Dx- 7/27/07, Left I/O- 7/31/07, Seminoma w/ small Choriocarcinoma, Stage I, further treatment-??

                  Comment


                  • #10
                    I am confident that I would be diligent in surveillance. I guess up until now I have viewed chemo and RPLND as somewhat equal but I guess chemo is much more extreme when weighing risks and side-effects. Either one is pretty scary but then again cancer is scary. Thanks for the welcome! This site has been a great deal of help over the past couple weeks. I am just now getting around to posting.
                    Dx- 7/27/07, Left I/O- 7/31/07, Seminoma w/ small Choriocarcinoma, Stage I, further treatment-??

                    Comment


                    • #11
                      Hey dude,
                      Welcome to the forum. Even though the majority of your tumor was seminoma, that very tiny amount of chorio changes things dramatically: it is now ruled a non-seminoma, and choriocarcinoma is by far the most aggressive form of TC. RPLND is unlikely to be an option for you because, as dadmo said, choriocarcinoma travels through the vasculature, and if it spreads, it can pop pretty much anywhere and ignore the retroperitoneal lymph nodes altogether. Surveillance is an option as long as your markers keep going down and your scans are clean. You will need to have your markers measured every 4-8 weeks (chorio always produces HCG). If for some reason your markers start to spike up, you will immediately get chemo. Hang in there, dude. We're here to help you out.
                      "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
                      11.22.06 -Dx the day before Thanksgiving
                      12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

                      Comment


                      • #12
                        Welcome, Mike. You might run your case by a testicular cancer center of expertise, but close surveillance sounds like your best choice.
                        Scott, [email protected]
                        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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                        Comment


                        • #13
                          Hi Mike,

                          So sorry we have to meet this way!!

                          I also am not a doc and don't know as much as the folks who
                          have responded, but when I hear a debate about an RPLND, I'm
                          reminded of the few guys who had the surgery, had no cancer in
                          the removed nodes, but had a relapse in the lungs a few months later and
                          had to have chemo. In my son's case, there were microscopic traces of
                          cancer in five nodes, but his cancer was mostly yolk sac, which I
                          guess doesn't seem to favor invading the vascular system the way
                          chorio does. I'm all for aggressive treatment, but as Fed and dadmo
                          mentioned, an RPLND doesn't sound like a logical course of treatment
                          for your case.


                          Whatever course you choose, do not ever miss your follow ups!!

                          Diane

                          Comment


                          • #14
                            Welcome!!!

                            it seems that our diagnose date is same
                            Last edited by TC Destroyer; 06-28-11, 10:34 AM. Reason: Spam
                            -------------------------------------------------------------------------
                            27/07/07 diagnosed
                            30/07/07 Right I/O
                            path: 5.00 cm mass with EC %40 / Imm. ter. %30 / semin %20 / YS %10
                            no vaslucar inv./ no lymphatic inv/no metastis
                            Stage I-A
                            surveillance
                            24/10/07 CT showed 2 enlarged nodes
                            Stage II-B
                            markers:
                            27/07/07 B-hcg:202 /AFP:260
                            13/08/07 B-hcg:0.306 /AFP:32/ LHD:293
                            20/08/07 AFP:13.25
                            05/09/07 AFP:3.7
                            05/10/07 AFP:2.7 B-hcg:6.01
                            30/10/07 AFP:6.0 B-hcg:17

                            Comment


                            • #15
                              Hi, just an update. I heard from my new doc today and he said that after looking at the slides they feel that I have pure seminoma!! No choriocarcinoma. All this time I have been researching treatment for non-seminoma and I know nothing about seminoma or radiation. I still am strongly considering surveillance. Any thoughts? By the way, my bloodwork and x-ray that I had done last week came back clear. How long does adjuvant radiation last? Is it done daily?

                              I guess this goes to show that getting a second opinion is never a bad idea!!

                              Michael
                              Dx- 7/27/07, Left I/O- 7/31/07, Seminoma w/ small Choriocarcinoma, Stage I, further treatment-??

                              Comment

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