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  • Husband just diagnosed - need some help

    This is a great forum and I am happy to have somewhere to turn for advice.
    My husband was just diagnosed with TC and I want to know what to expect for treatment. He had Testis-Left Radical Orchiectomy last week. We are awaiting CT Scan. The results of intial tests are below but wondering what to expect. Sounds to me as if this means nonseminoma and likely chemo based what I have read. Do they still do RNDLP to remove Lymph nodes? Any feedback would be appreciated. It appears as though he would be a minimum of Stage IS or IIC or IIIB...

    All 3 markers were elevated. (AFP - Abnormal at 1116.) (HCG - abnormal at 155) (LDH Abnormal at 580)

    Pathology:
    1) Mixed Cell (embryonal carcinoma, seminoma, choriocarcinoma). There were no percentages given - shouldn't there be?
    2) Intratubular germ cell neoplasia.
    3) Atrophy of seminiferous tubules

    Primary Tumor pT2 tumor limited to the testis and epididymis with vasular/lymphatic invasion or tumor extending through tunica albuginea and involvement of tunica vaginalis.

    direct extenstion of invasive tumor - rete testis
    venous/lymphatic vessel invasion - present
    comments: focus of choriocarcinoma is small. tumor invades into rete testis. cannot determine if tumor involves hilar/perihilar soft tissue.

    Thank you,
    Worried Wife
    Husband:
    11/06 Left I/O
    11/06 - 2/07 2xBEP, 1VIP, 1EP
    2/08 Recurrence 2xTIP (second TIP reduced dose)
    1xHDC - Cardiotoxicity (no second BMT possilbe)
    11/08 - Thoracic Surgery to remove tumor (dead cancer)
    1/09 Scans Clear - AFP Rising
    4/09 AFP 1600
    4/09 Thoracic Surgery (again) found yolk sac & teratoma
    7/09 AFP at 3! & CT Clear
    2/10 Tumors in chest (again) likely teratoma
    11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
    10/12 AFP 29. Scans clear.

  • #2
    It's definitely non-seminoma. You won't know the stage until after the CT scan and new blood tests. If there is no spread, surveillance may be an option. If there is confirmed spread, RPLND or chemotherapy may be necessary.

    Hang in there, you'll both make it through!
    Last edited by Scott; 10-31-06, 09:17 PM.
    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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    • #3
      Trisha:
      Welcome, I'm glad you found us. First you should know that with proper treatment you husband has every reason to expect to be cured. That's the good news, the bad news is that from what you posted it seems that chemo is likely and it will probably be 4xEP or 3xBEP. It's rough but most on this forum have been down that road. I can't answer about the lymph nodes it's way too early. If his nodes are swollen now it will increase the odds of needing an RPLND but it all depends on the size of the nodes after chemo. If you haven't done it already check out this site for great information about tc. When all the tests are in get and keep copies of everything it will be important down the road. When are the next round of tests scheduled for?
      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
        CT Scan is Friday

        CT is Friday... but not sure how long it takes to get those results but should be quick. Should he have his blood markers tested again now... or they wait several weeks.

        Also I should have visited your site earlier as I see that I should have had his testosterone level tested before surgery. Thank you so much for your comments.

        Most of what I read has said that someone in Stage IS need chemo. I think he is a IS in best case due to elevated blood and pt2 from pathology.

        thank you!!!!
        Husband:
        11/06 Left I/O
        11/06 - 2/07 2xBEP, 1VIP, 1EP
        2/08 Recurrence 2xTIP (second TIP reduced dose)
        1xHDC - Cardiotoxicity (no second BMT possilbe)
        11/08 - Thoracic Surgery to remove tumor (dead cancer)
        1/09 Scans Clear - AFP Rising
        4/09 AFP 1600
        4/09 Thoracic Surgery (again) found yolk sac & teratoma
        7/09 AFP at 3! & CT Clear
        2/10 Tumors in chest (again) likely teratoma
        11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
        10/12 AFP 29. Scans clear.

        Comment


        • #5
          He's only stage IS if his markers remain elevated after the orchiectomy.
          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


          • #6
            Originally posted by Trisha
            Should he have his blood markers tested again now... or they wait several weeks.
            Though it will take more than a month for his AFP level to return to normal, they'll test again sooner than that to make sure it's on the expected path down.
            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


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

            Comment


            • #7
              Stage IS

              Scott thank you so much - that makes me feel so much better. I didn't realize that the levels need to remain elevated to be IS. So I thought that the best case would be the IS. That is great news... so I will hope they fall soon. Many thanks!
              Husband:
              11/06 Left I/O
              11/06 - 2/07 2xBEP, 1VIP, 1EP
              2/08 Recurrence 2xTIP (second TIP reduced dose)
              1xHDC - Cardiotoxicity (no second BMT possilbe)
              11/08 - Thoracic Surgery to remove tumor (dead cancer)
              1/09 Scans Clear - AFP Rising
              4/09 AFP 1600
              4/09 Thoracic Surgery (again) found yolk sac & teratoma
              7/09 AFP at 3! & CT Clear
              2/10 Tumors in chest (again) likely teratoma
              11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
              10/12 AFP 29. Scans clear.

              Comment


              • #8
                Trisha:
                If his scans and x-rays are clear and the markers drop he will be a candidate for surveillance.
                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


                • #9
                  x-rays

                  should we also get x-rays of chest in addition to CT? Thank YOU!!!
                  Husband:
                  11/06 Left I/O
                  11/06 - 2/07 2xBEP, 1VIP, 1EP
                  2/08 Recurrence 2xTIP (second TIP reduced dose)
                  1xHDC - Cardiotoxicity (no second BMT possilbe)
                  11/08 - Thoracic Surgery to remove tumor (dead cancer)
                  1/09 Scans Clear - AFP Rising
                  4/09 AFP 1600
                  4/09 Thoracic Surgery (again) found yolk sac & teratoma
                  7/09 AFP at 3! & CT Clear
                  2/10 Tumors in chest (again) likely teratoma
                  11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
                  10/12 AFP 29. Scans clear.

                  Comment


                  • #10
                    Trisha:
                    Embryonal carcinoma can skip the lymph nodes and go directly to the lungs so the doctors will want to look there also.
                    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


                    • #11
                      Trisha, I should also note that chemotherapy may still well be needed. If it is, it's a very effective cure.

                      The invasion noted in the pathology report does raise the likelihood of (but doesn't guarantee) metastasis. Please keep us posted as you learn more.
                      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


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

                      Comment


                      • #12
                        This is a great forum for info and also support! Hang in there and be positive.
                        My thoughts and prayers,
                        Brian
                        diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

                        Comment


                        • #13
                          Trisha:
                          If (and it's a big if) his reports show spread the disease is still amazingly curable. When all the reports are in don't be shy about getting a second opinion about his treatment. See if you doc can give one of the experts a call. We can give a lot of advise on this forum but we are not doctors just opinion givers, with lots of first hand knowledge.
                          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


                          • #14
                            Trisha, where is your husband being treated? I would expect an aggressive approach to your husband's treatment due to his tumor make up and the lymphatic/vascular invasion. Don't be afraid of it. 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

                            Comment


                            • #15
                              Thank you

                              Based on your advice and the website I have a second opinion set up with a Dr. that works on one of your experts team. This has all been incredibly helpful and I can't thank all of you enough
                              Husband:
                              11/06 Left I/O
                              11/06 - 2/07 2xBEP, 1VIP, 1EP
                              2/08 Recurrence 2xTIP (second TIP reduced dose)
                              1xHDC - Cardiotoxicity (no second BMT possilbe)
                              11/08 - Thoracic Surgery to remove tumor (dead cancer)
                              1/09 Scans Clear - AFP Rising
                              4/09 AFP 1600
                              4/09 Thoracic Surgery (again) found yolk sac & teratoma
                              7/09 AFP at 3! & CT Clear
                              2/10 Tumors in chest (again) likely teratoma
                              11/10 Starting Trial Drug!... actually did not start trial. tumors shrinking
                              10/12 AFP 29. Scans clear.

                              Comment

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