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Advice on the process

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  • Advice on the process


    I'm 32, and the last few weeks have been extremely stressful. Discovered a lump in late March, took a week or two to call Dr who then told me it was probably nothing and check back in a few months. Scheduled an appt anyway a few days later and ended up with an ultrasound "since we started down this road" 4/23. I haven't seen the report from the ultrasound, but my urologist told me there was a relatively large (3cm?) seminoma in my left testicle. Radical orchiectomy 4/27, told 5/3 that it wasn't all seminoma. I guess there was also some other types of tumor in there... teratoma seemed to be the nastiest. Tumor markers from pre-op were "slightly elevated". More blood drawn and went in for a pelvic/abdominal CT scan same-day. Still waiting for results... next urologist appt Thursday 5/10.

    To be honest I'm pretty worried about the CT results. I was hoping for 100% seminoma after the orchiectomy, since it seems like those are a bit more treatable and slower spreading. I've called the office twice today since the waiting is driving me crazy, and of course their computers are down.

    Should I be speaking with an oncologist as well? Should my PC doctor be in on this? Does it usually take a full two weeks after orchiectomy to get full staging?

    Maybe I'm jumping the gun here doing too much Googling and worrying, but it I'm a little bummed that there is little hope that I can simply move on to an observation protocol with an NSGCT that includes teratoma.

    Sorry for the rambling. Any advice would be greatly appreciated.

  • #2
    A few things. One, worrying doesn't really do anything at this point, it isn't going to change anything, it is what it is. Easier said than done though for sure :-)! Second, most types of TC cancer are highly treatable, not just seminoma. So no need to be overly concerned that it wasn't 100% seminoma.

    I would expect CT and bloodwork results to take 3-5 days. Your urologist (or MAYBE PC doc) will see these results and relay them to you and at the same time refer you to an oncologist. My oncologist prefers to give results in person, typically I don't get any results over the phone or in portals until after they have told me them in person. You really should be referred to an oncologist even if post I/O bloodwork and CT are both completely negative, as you will be going on a monitoring regime that will last for ~5 years that should be watched over by an oncologist really.
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    3/29/2018 all clears up to this date!


    • #3
      Some guys have reported fairly long waits for results, where are you located?
      Also, what did your doc have to say on 5/10?

      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP


      • #4
        Thanks for your replies. I created a new topic in the treatment forum here: