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Saying Hello

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  • Saying Hello

    I've been reading since sometime during my chemo but thought I'd take the time to introduce myself. The information on this board has helped me a great deal during this time and I wish I had discovered it sooner as I think I may have done a few things differently back at the beginning if I had.

    I first noticed something was wrong last November. We'd been having unseasonably warm weather for the time of year in upstate NY so a friend and I decided to get in one final bike ride for the year. Afterwards I started having some discomfort in the testicle which i figured probably just got beaten up a bit during the ride. About a week later it was still bothering me and I was thinking it might be time to see a urologist, just to be safe, when I noticed a lump on my testicle.

    The US clearly showed something strange in the testicle but nobody seemed to be able to feel the mass other than me. The first urologist wasn't sure what it was but felt that the testicle should probably come out since it was most likely a tumor. Since I don't have any family in upstate NY I decided I would have the surgery done in Boston. The urologist there was certain that it wasn't a tumor as were the 3rd and 4th opinions I got. They decided to treat it as a possible infection. My HCG was 0 and my AFP was about 7.5 this whole time so those didn't really tell us anything one way or the other. A month of cipro later and no change in the mass they decided it was time to come out.

    As it turned out the mass was a pure embryonal carcinoma, most of which was necrotic, hence the reason it looked so strange on the ultrasound. There were no signs of invasion and my CT was clear so I went on surveillance. After talking to an oncologist upstate he suggested that I go see a doctor at Sloan Kettering as my girlfriend was living in Brooklyn at the time and I was splitting time between the two locations. Sloan was nice enough to let me fax my records to them but they never bothered to respond to me or return my follow up calls other than to confirm that they had received my records and would be in touch soon. After two weeks of this I decided to see an oncologist at New York Methodist instead as it was only 1 block away from our apartment in Brooklyn.

    In March my AFP was up to 12 so I went in for a CT. My doctor called 2 days later to tell me the scan was clear, much to my relief. The following week I got a call from him letting me know that the radiologist reading my scan had screwed up and missed a 2.2 cm retroperitoneal lymph node. My oncologist thought it strange that given my rising AFP that my scan would be clear so he double checked it just to be safe. He was very apologetic about the whole situation and although I wasn't pleased with them missing it the first time through I was glad that my oncologist was really looking out for me.

    I started 4 rounds of EP in April. The first round was really a breeze and by the following weekend I was walking 4 or 5 miles a day. After my first round of chemo my AFP actually increased from 53 to 65. Although I knew that this is not an unheard of occurrence it was still quite nerve wracking. My white blood counts and red counts were very low come time to start the second round and that would be the case for the rest of my treatment meaning I got to have neulasta shots after every round. After the second round my AFP had dropped into the 9's and continued to drop slowly during treatment. I was really feeling fine until after the 3rd round when my red counts started getting really low and by the 4th round I was too exhausted to do much of anything. At that point I was pretty happy that I only had to travel 1 block to and from my oncologist's office.

    After the final round of chemo my AFP was down to 6.4, which was lower than it had been at any point before it started to climb. I had my post-chemo scan about 2 weeks after I finished and the node was reduced to 5 mm. My oncologist and most of his colleagues felt that it wasn't necessary to do an RPLND at that time but also mentioned that he did have one colleague who felt that I should and therefore I should get a second opinion from a urologist who specializes in them. I went to Dana Farber and met with Dr. Richie who also agreed that it made more sense to hold off on surgery given my response to treatment and lack of teratoma in the primary tumor.

    So that's where I am now. I'll be having my next CT in about 2 weeks and I find myself getting really anxious at times as the date approaches. Whereas during my first round of surveillance I didn't worry about it much at all, I feel very different this time around. I know the odds are well in my favor but I have trouble thinking that I'm anything other than one of the unlucky ones. Enough negative talk, I'm going to keep those thoughts to the side and try to only worry about them if it becomes necessary. Thanks again to everyone here for the wisdom and inspiration you've given me.
    Last edited by nushawn; 10-19-07, 01:49 AM.
    Left I/O 12/2006
    3/2007 2.2 cm node AFP-53
    4/2007-6/2007 4XEP
    7/2007 5 mm node AFP-6.4
    10/2007 All Clear

  • #2
    Welcome to the forums.

    It sounds like you're on your way back to good health. It's really lucky that your oncologist investigated your CT scan. I'm not sure how you miss a node that big!

    With the node shrinking during chemo and no teratoma in the primary tumor, you might never need the RPLND which is great.

    I still get really nervous before my CT scans, it's pretty natural. But sounds like you had a complete response to the chemo.

    Best wishes for an "ALL CLEAR"
    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.


    • #3
      Originally posted by Fish
      Welcome to the forums.

      It sounds like you're on your way back to good health. It's really lucky that your oncologist investigated your CT scan. I'm not sure how you miss a node that big!

      Best wishes for an "ALL CLEAR"

      I have no idea how he missed it either. My father is a CT Tech and he used a number of curse words along with the term "world's worst radiologist" to describe missing something like that. When he and a couple of the radiologists at his hospital took a look at the scan they were absolutely dumbfounded that this could have happened. We all make mistakes though, but fortunately it was caught and only cost me about 2 weeks in terms of starting treatment. Ironically, that was the only scan where I didn't have the radiologists at his hospital review it as I hadn't had a chance to get him a copy of the study. So from now on I'm getting my scans done at my father's hospital. Not only do I know that I'll have pretty much every radiologist in the hospital review it, but I can generally get my results before I leave the building, which although it won't change the outcome will certainly cut down on the worrying.
      Left I/O 12/2006
      3/2007 2.2 cm node AFP-53
      4/2007-6/2007 4XEP
      7/2007 5 mm node AFP-6.4
      10/2007 All Clear


      • #4
        Hey Nushawn,

        Glad you posted.

        I'll be thinking about those magic words, "All Clear."



        • #5
          You certainly got off to a rough start, but it seems as if everything is on track now. Good luck with the follow ups.
          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.


          • #6
            Thanks for joining us, Nushawn.
            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!


            • #7

              Allow me to join in welcoming you to the forums. Although it sucks that the met was overlooked the first time around, I do have to say that you being proactive from the very beginning is what has thus far been a good resolution to your situation. You should be commended for taking the initiative to get things done. I am glad to hear that things are working out well. Best of luck with the surveillance. Cheers,
              "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
              11.22.06 -Dx the day before Thanksgiving
              12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.