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I'm Confused!!!!

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  • I'm Confused!!!!

    Hi everyone,
    I need your help. Now that the pathology of my tumor was confirmed by a second opinion from Dr Peter Drew from Shands, I had two visits with oncologists this week - and two very different opinions. FYI, the pathology is Seminoma with Syncytial Trophoblastic Cells, which caused my HCG to elevate to 33 before surgery. About a week after surgery, it fell back to normal (<2). All other bloodwork was normal. CT Scans were all normal. The pathologist noted that the tumor was entirely contained within the testicular parenchyma (which I understand means no spread).

    So here's the conflict:

    My urologist, Robert Bradford, who admits he sees no more than 5 cases of TC per year, sent me to Radiation oncologist, Philip Sharp (who see's about the same amount). When I questioned Bradford about the RT, his answer was that RT was the standard treatment. When I saw Dr. Sharp, his only recommendation was RT, about 2000-2500 rads? over 20 visits.

    Yesterday, I had a 2nd opinion consultation with Dr. Mayer Fishman, a Genito-Urinary Oncologist at Moffitt Clinic in Tampa. He told me there's a 95% chance I am already cured. He recommends Surveillance due to the size of the tumor, and no invasion or metastasis. Fishman also said the Syncytial Trophoblastic Cells would help identify a recurrence by the elevated HCG. He feels so confident of chemo, that if I do have a recurrence, it can be easily managed with what he described as a double dose of 4 rounds of EP. He truly described the recurrence as an "inconvenience".

    At the end of the consult, I asked him about Sharp's recommendation of RT. He wouldn't discourage it - and even asked about the dosage - and said it was a "safe, low dose". I urged him to help me decide which way to go, and his response was "pick a path, either way, you're going to be fine".

    Note: All three doctors talked about, and seemed to place significant weight on the NCCN guidelines - which seems to me like a "cookie cutter" type of treatment outline. Have any of you had similar experiences?

    So now I've been put in a position of making my own decision, and even after all I've read - I am undecided. I am leaning toward Surveillance due to the size of the tumor alone. I am not convinced that in a recurrence, the HCG will be automatically elevated.

    Please comment. Thanks! CW
    Right I/O 5/19/06
    Seminoma with Trophoblastic Cells: 0.7cm
    Left I/O ?

  • #2
    Well, I don't want to discourage you, but that 95% number the doctor gave you is a bit on the high side. Typically you see numbers around 80% for the orchiectomy alone in stage I seminoma, 99% if you add the radiation treatment.

    If I were in your position, I'd go with surveillance. If you can stick to the appointments in the recommended protocol, why not take a 4-in-5 chance that you're already cured and spare your body the harsh effects of unnecessary treatment?



    • #3
      if you're really confused and want a third opinion, consult with the specialists on the page or contact Indiana University.

      They can help with the decision making
      Wife of Kevin Murphy
      Diagnosed 7/16/04 100% Choriocarcinoma
      Oriechtomy 7/20/04
      4xBEP 8/04-11/04 BHCG:1200 (lung only)
      Rediagnosed 12/27/04 BHCG: 50
      1xVIP 1/05 (lung)
      HDC/Stem cell Indiana 2/05-4/05 BHCG: 51-4.5 (lung)
      HDC failure 5/05
      3xGemzar/Taxol 6/05-9/05 (lung only)
      VP-16 w/Avastin 9/05-1/06 (lung only)
      Cyberknife 5" lung tumor 2/06
      cyberknife 6 brain tumors 3/06
      1xOxaliplatnin 3/06 (liver, lungs, kidneys, left hip)
      Passed away 4/13/2006


      • #4
        Thanks for the info.

        TSX: I know what you're saying - I've read all kinds of data that varies from 80% - 90%, but only one or two say 95%.

        Hopeful: Maybe a 3rd opinion could tilt the process in one direction. A few weeks back, I emailed with IU Pathologist Thomas Ulbright, and he was very reassuring - and easy to communicate with. Maybe someone at IU Oncology could shed some new light on this.
        Right I/O 5/19/06
        Seminoma with Trophoblastic Cells: 0.7cm
        Left I/O ?


        • #5
          I think it's good to use the NCCN guidelines; they document proven treatment options.

          For myself, I lean toward having treatment when it's known to be needed.

          Either choice you make is a good one, as long as you make it decisively and stick with the program.
          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!


          • #6
            I was faced with the same choice after my second TC which was pure seminoma, no elevated hcg however. I chose surveillence, because like Scott, I really only want treatment if its proven to be needed. Also, my doctors said that recurrence could be treated with radiation OR chemo, depending on the restaging. So far (2.5 years out) every thing has been clean. It's not an easy decision, but either way, you really can't go wrong.
            Right I/O 4/22/1988
            RPLND 6/20/1988
            Left I/O 9/17/2003

            Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


            • #7
              Thanks for the input. I guess its a little difficult to settle on the idea of waiting to see what happens. The reminder that at least 4 out of 5 are cured by orchiectomy alone is a strong message. From what I've read, almost all the studies rely upon size of the tumor and invasion outside the testical - in order to determine how necessary RT is for each case. In my case, since the tumor size is small (0.7 cm), and there was no mention of rete testis or vessel invasion on my path report, I am feeling more inclined to go the surveillance route. Plus, last night I did some more research on RT, and found a few articles that were really eye openers - mainly the incidence and expectation for secondary tumors - and the fact they are more difficult to treat than seminoma.

              Anyone else who is/was Stage I Seminoma, I'd like to hear your story. What did you choose and why? Thanks again, CW
              Right I/O 5/19/06
              Seminoma with Trophoblastic Cells: 0.7cm
              Left I/O ?