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after everything, another round of tests...

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  • after everything, another round of tests...

    I was diagnosed with stage 2B on July 3rd 2009 and had a right orchiectomy the same day.

    After 4 cycles of BEP which ended on October 6 2009 I was told one of the affected lymph nodes had not completely shrunk and I was scheduled for an RPLND. After the RPLND the pathology on the lymph node came back clear. At a follow up appointment in December I was told my AFP was back up to 17 (the same reading as on the day I was first diagnosed). My AFP did drop during chemo, but was high again with no other high markers.

    I had another CT in early February and more bloodwork. The CT was clear, but the AFP was now at 20 so I was scheduled for a PET scan.

    I had the PET scan 3 weeks ago and just got the results back this past monday, it (like the previous CT scan) came back clear. The AFP once again came back at 20.

    My oncologist has booked me now for an ultrasound of the remaining testicle, a head CT because in his words "just to make sure there is nothing lurking in the brain" and more bloodwork.

    I admit I was lucky and sailed through chemo without any nausea or major side effects and only had to deal with neupogen shots. I have been really good at staying positive through it all, but since mondays PET scans results I am not dealing quite so well.

    My patience is wearing thin, but I refuse to let this disease get me.

    Has anyone else had to go through this many tests without getting any definitive answers??

  • #2

    It's a real pain when you have higher than normal levels of afp. Mine only stayed between 6 and 8 but I still worried because they weren't in the normal range.

    The one piece of information I found most useful was this link.;

    Basically "Adult reference range is 0 - 8 ng/mL and includes 99% of healthy individuals. A difference of more than 20% between two measurements is considered to be medically significant."

    You could just fall into the 1% with a higher than normal afp particularly as no two measurement have yet been greater than 20%. There also doesn't seem in your case to be a rising trend in afp which you would expect with TC growth. I suspect thet your oncologist is just trying to, wisely, cover all the bases but if he finds no evidence of spread will probably just keep you on close surveillance. A pain I know.
    16 Dec 09 2.7 cm mass
    18 Dec 09 Right I/O
    Mixed germ cell - EC, chorio, seminoma
    5 Jan 10 CT scan - negative; Stage 1b
    3 Mar 10 CT scan - positive nodes; Stage IIa
    29th March to 11th June 4xEP
    Neutropenic sepsis after cycle 4 of EP
    Post treatment CT scan - complete resolution
    42 month follow-up - all clear


    • #3
      Hey Datura,

      Welcome to the forum. Hopefully your oncologist is in touch with Michael Jewett at Princess Margaret Hospital in Toronto. You could fire an off an email to Jewett yourself explaining your situation, he answers rather quickly.

      If you could post your original pathology, we may be able to bring some more ideas to the table.

      Keep us posted.


      Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

      “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis

      Mass found 11/20/08
      Left I/O 11/25/08
      Pathology: Seminoma, Stage 1
      Surveillance: All Clear since


      • #4
        Hi Datura.

        It is possible (though unusual) for some guys to have an AFP which is normally higher than the general population. One of our members, Jonwil, had this situation, and went though many investigation before it was determined (by a process of elimination, I think) that the high level was normal for him.

        Your docs are, of course, doing the right thing by perusing the issue. I truly understand how hard it is to wait and wonder, though.

        It would be handy to know some more about your original diagnosis. What was your tumour make-up. Was the disease particularly widespread of high volume?

        Embryonal Carcinoma; Seminoma. Marker negative.
        August 2001: Right I/O .
        August - December 2001: Surveillance .
        December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
        December 2001 - March 2002: 3xBEP .
        Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

        March 2012 - Ten years since finishing chemo.

        Survivorship Blog is here


        • #5
          thanks for the replies, it is comforting to know I am not alone in this.

          the original tumor pathology was listed as a mixed germ cell, but was sent to the Princess Margaret hospital for another opinion and was declared to be a seminoma. The two afftected lymph nodes were 4cm and 5.5cm respectively (the larger of the 2 stopped shrinking at 3cm and was on the left renal artery)

          I am still looking for the journal I kept last summer with all the original levels through till the ones at the end of chemo, if it doesn't surface soon I'll make a call to get the numbers and get them up here.