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33 year old son just diagnosed

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  • 33 year old son just diagnosed

    Hello,

    My son found something "not right" when he did a self
    exam of his testicles on Palm Sunday and went to his doctor
    the next day. Three days later, after an ultra sound and
    visit to urologist, his testicle was removed. He just got the
    results of the biopsy, blood work and CT Scan. Maybe some
    of you more knowledgeable folks have a better understanding
    of his results.

    He had three masses on the testicle, the largest being
    2.0 x 1.9 x 2.0 centimeters. #2 measured 1.1 x1.1x 1.1 and
    #3 measured 0.6 x 0.5 x 0.4. The largest tumor is 80-85%
    embryonal, with the remainder consisting of teratoma. The two
    smaller masses were also mixed embryonal and teratoma.
    All margins were negative and spermatic cord and spermatic cord
    margin were negative. The uninvolved portion of the testis
    was unremarkable.

    The Pathologic stage is "Tentatively T2 (probably lymphatic vessel
    invasion observed.) The report also says "Lymphatic invasion
    appears to be present" in another area of the summary.

    His CAT Scan, thank God was negative in all areas.

    His HCG tumor marker was 88. There is an entry on the Lab
    Summary that is titled, AFP, Tumor Marker, that has the date and
    time listed under it, and under the date and time is
    Alpha Fetopr Tum, and under that is:
    Rslt: 41.0 H RR:<6.1. (I have no idea what that is)
    The rest of the blood work items listed fall into the normal levels.

    His urologist suggested two additional blood tests to see if the tumor
    markers will fall, as he expects them to, and then he advised him to
    have the RPLND. He said the surgery could be a cure and mentioned
    the teratoma, which would require surgery anyway, if it spread.
    He said he would like to see my son avoid chemo, if possible and he feels
    the surgery is the best way to do it. As a family, we're all in agreement
    and are hoping this will be done within the next few weeks.

    As scary as all of this has been, we're positive about the eventual
    outcome, but as a mother, it pains me to think of what my son will
    have to go through to get rid of this disease. Although, I guess my
    going through labor was similiar (They didn't have epidurals back then)

    We realize there is a chance that he could need chemo after the surgery,
    but we'll cross that bridge when we have to.

    For the past few days, this site has been a life line for me! I feel like
    I already know some of you folks. I am grateful that you are all here.

    Diane

  • #2
    Welcome, Diane. Things will get better before too much longer!
    Originally posted by DianeE
    His HCG tumor marker was 88. There is an entry on the Lab Summary that is titled, AFP, Tumor Marker, that has the date and time listed under it, and under the date and time is Alpha Fetopr Tum, and under that is: Rslt: 41.0 H RR:<6.1. (I have no idea what that is)
    That's elevated AFP, measured at 41.0 ng/mL, which is high (H) compared with the reference range (RR), which is less than 6.1.

    Did you discuss the possibility of surveillance, which will also lead to cure? Even if that's not the choice you make, you should know the pros and cons.
    Scott, [email protected].com
    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
      Hi Diane.

      Sorry to meet you on this background.
      You have a lot of valuable info - that's good.

      I'll focus on a few thing here:

      Embryonal carcinoma is a rather aggressive form of TC, that tends to spread though both lymphatc vessels as well as blood vessels.
      There seems to be only lymphatic invasion, no vascular. That's good.
      The lmphatic spread leads to retropreitoneal lymph nodes and RPLAN will fix that.
      If there were vascular invasion, EC might skip the repoteritoneal nodes and to straight to the lungs. Then it's chemo.

      The tricky thing here is, that with a clear CT scan, there is no apparent reason to do anything! But If there is a tiny spreading afterall, it will manifest itself later though. Be it raised markers and/or enlarged nodes on an abdominal CT scan or a thorax X-ray.

      You doc is right in trying to avoid chemo. It's very effective but I suppose it will cost something in the other end of life...
      PRLND done by a real expert is a less morbid approach.

      Your sons markers will be decisive.
      If they normalize completely, I think I would say surveillance.
      If not, well, RPLND can tell if it has spread to the reproperitoneum and will likely cure him in that event.
      No matter what you chose, chemo provides a safety net that allows you to take the less toxic road.


      Best wishes
      Jens
      Embryonal carcinoma, stage II,
      3 x BEP, apr - june 2005
      Surveillance

      Comment


      • #4
        Originally posted by Jens
        RPLND done by a real expert is a less morbid approach.

        Your sons markers will be decisive.
        If they normalize completely, I think I would say surveillance.
        If not, well, RPLND can tell if it has spread to the reproperitoneum and will likely cure him in that event.
        Jens makes an excellent point about having the RPLND surgery done by an expert. You may want to consider going to Dr. Joel Sheinfeld at Memorial Sloan-Kettering Cancer Center. At least make sure your surgeon has performed this operation many times.

        About the tumor markers, though: if they don't normalize, RPLND isn't the right choice. That will mean chemotherapy for sure.
        Last edited by Scott; 04-22-06, 05:45 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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        Comment


        • #5
          Hi again Scott and Jens,

          Thanks for the info from both of you. Actually, the urologist did
          mention surveillance, but it sounded like it would be anxious month
          after anxious month. He thought the surgery would be the most
          effective way to completely halt the disease.

          Scott, you echoed the urologist who also said if the tumor markers
          don't go down, my son won't be a candidate for the surgery. He did
          say more than once that he does expect them to go down. I sure
          hope he knows his stuff!! He recommended Indianapolis for the
          surgery and after researching, it seems like a good choice. I'm sure
          your suggestion is a good one as well. It's so hard to know which
          battle plan to follow, when you really don't know everything about the enemy!!

          Thanks again guys for your advice and info.

          Diane

          Comment


          • #6
            Originally posted by DianeE
            Actually, the urologist did mention surveillance, but it sounded like it would be anxious month after anxious month. He thought the surgery would be the most effective way to completely halt the disease.
            Keep in mind that the disease may already have been completely halted by the orchiectomy, but it sounds as though you're pretty well settled on the RPLND surgery.
            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
              Diane:
              Surveillance can be a very hard road for some people but it is a great alternative to RPLND and/or chemo. If your son should need an RPLND the people in Indiana are world class but so are a few others. Sloan Kettering in NYC is great and Dr. Sheinfled is as good as you can get. I will check some older post because we have another (mom) member who lives in chester county and had a very good result with someone who would be local to you.
              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


              • #8
                Originally posted by dadmo
                I will check some older post because we have another (mom) member who lives in chester county and had a very good result with someone who would be local to you.
                ...and to clarify, not just a "mom" but the member who posts under the name "Mom" is also from Chester County.
                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


                • #9
                  Hi Diane. I live in Delaware County, 30 years old, just had RPLND last month.

                  I had my surgery at University of Penn by a great urologic surgeon, Dr. Bruce Malkowicz, whom I would highly recommend if you were to stay in the area. I'm almost fully recovered from the rplnd now, with zero complications.

                  Penn also has a well respected testicular-specialist/oncologist named David Vaughn whom I now see monthly for surveillance. PM me if you want to talk or need more info. Good luck.
                  01/16/06 markers at 134 / 117
                  01/19/06 right i/o
                  01/26/06 diagnosed with 100% embryonal nonseminoma
                  2/11/06 AFP at 6.5, HCG below 2
                  3/8/06 RPLND; 1 of 21 nodes removed contains cancer
                  3/22/06 markers normal; surveillance
                  8/23/06 AFP at 13; CT detected nodes in lungs
                  9/11/06 3xBEP begins

                  Comment


                  • #10
                    Also, I hope the urologist mentioned that although nerve-sparing surgery usually preserves fertility, it would be a good precaution to bank sperm before surgery.
                    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


                    • #11
                      Hi Dadmo,

                      Thanks for your response. Yes the waiting game would be so
                      difficult for all of us. I did see that "Mom" lives in Chester County
                      and may send her a PM to say hi and get names from her.

                      Rusty, I sent you a PM. If my son can get the surgery in Phila.,
                      it would be wonderful. Hopefully, he'll see your message and
                      the others today.

                      Hi again, Scott,

                      The urologist did mention sperm banking.
                      What is so ironic in this whole mess is that my son had
                      an appointment for a vasectomy at the end of the month
                      which he cancelled, of course.

                      Diane

                      Comment


                      • #12
                        Originally posted by DianeE
                        The urologist did mention sperm banking. What is so ironic in this whole mess is that my son had an appointment for a vasectomy at the end of the month which he cancelled, of course.
                        Well, at least sperm banking isn't a concern, then.
                        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


                        • #13
                          Quite a coincidence, both with sons in the early 30's; both with EC and teratoma, both named Dianne/Diane, both in Chester County, PA. I am sending you a private message Diane and will try to help you out as much as I can. 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


                          • #14
                            Dianne,

                            I just sent you a PM. How uncanny is this!!!!????

                            Diane

                            Comment


                            • #15
                              Wonderful news! Results from my son's first blood work after his
                              Orchiectomy showed his tumor markers are down significantly
                              and his urologist told him to move forward and get the RPLND
                              scheduled. Still a bit of a road to travel, but this is certainly
                              a step in the right direction for him.

                              Diane

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