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Is That Even Possible?!

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  • Is That Even Possible?!

    Hi everyone!

    I have been diagnosed with a stage one nonseminoma about four years ago, at the age of 17. I've gone through surgery to remove the tumor, and after that and up to this day am going through surveillance only (no chemo, no RPLND, only surgery to remove the tumor).

    I was told by the doctors that the stage I tumor was "well encapsulated" and the chances for it to have spread or to return in someway are very low.

    There is something I really cannot understand though and the doctors always find a way out of without giving me an honest answer. As far as I could tell by searching the web and asking the doctors of similar situations, there is no known case of a stage I nonsemonima that recurred after a few years while not showing any signs with the markers yet with showing in the CT scan.

    The natural question to follow is, then, why on earth do I even need the periodical CT scan in my situation and the blood markers are not enough?!

    Can anyone please answer or point out a known case where a recurrence happened to a stage I nonseminma, and that recurrence was seen in a CT scan yet invisible with the markers? (again, we're talking more then 2-3 years after the tumor was removed)

    My guess would be that this is a formal procedure that is hard to bend and is not really important.

    Thanks very much for your time!

  • #2
    Were your markers elevated when you were diagnosed?


    • #3
      Yes, of course. Both BHCG and APF were high, and among others I also get tested for LDH levels although these were normal at the time I was diagnozed.


      • #4
        The reason I asked that is because my husband's markers were never elevated, but his cancer had spread to his lungs. His oncologist told us that wasn't that unusual b/c something like 30% (I might not have that number exactly right, it was around that) of non-seminomas don't result in elevated markers. I would guess that is why they continue the scans.


        • #5
          Was there any seminoma or teratoma in your pathology report? In any case, you should only have a couple more CT scans. The recommended surveillance protocol posted at the TCRC discontinues them after year 5.
          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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