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  • Hello from Atlanta TCx2

    Hey guys,

    I am a new member but I am not new to this site as it has been a very useful resource over the last year. I am 32 with 2 children. We have a 3 year old boy, pre-cancer and a 3 week old boy, conceived after the first cancer. I am a TCx2 Survivor and this is my story.


    In September 2006, eleven months after diagnosis and radical I/O of the left testicle A dull intermittent pain in my remaining right testicle worsened. In a couple days I could feel an irregularity in texture. I knew exactly what was happening. The ultrasound clearly showed an intra-testicular mass. The Urologist recommended an orchiectomy. As you might expect I was very reluctant to sacrifice my last testicle without a fight and I was not interested in beginning testosterone replacement therapy. Through a family friend (Pathologist and TC survivor) I learned radical orchiectomy is not always performed for contra lateral testicular cancer. Surgeons are, in some cases, able to dissect the tumor and salvage the testicle. It is not clear if there is a higher rate of recurrence for this procedure however any risk might be manageable considering a compliant patient and a desire to avoid hormone replacement therapy.

    We sent ultrasound films to Dr Bihrle in Indiana to determine if I was a candidate for the organ sparing surgery. I was willing to travel for the procedure but began to interview local doctors for the procedure upon learning I was in fact a candidate. The candidacy/success of the procedure is dependant on the size of the tumor, location of the tumor and if clear margins could not be obtained radical orchiectomy would be required.

    BCBS went above and beyond what I could have expected. With their help we interviewed over 70 local surgeons in a day and a half. None had performed the surgery. Two were willing to do the procedure. The surgeon I selected quickly addressed my primary concern. Although he had not performed this exact procedure he had, on numerous occasions stitched damaged testicles back together after trauma. Also, he would consult with the experts in Indiana to learn the particulars.

    The surgery went well. The partial orchiectomy left me with about 80% of fully functioning testicle, though the procedure is followed by local radiation and radiation would leave me sterile. Recovery was comparable to the radical orchiectomy with the obvious exception being a very tender testicle rather than an empty scrotum. Pathology reported an embryonal carcinoma and yolk sac tumor. The dissected margins were grossly clear but there was lymphovascular invasion and ITGC.

    Again, we consulted Indiana. Dr Einhorn reviewed the reports and indicated this was a new cancer and not a recurrence. Both Dr Einhorn and Dr Bihrle noted surveillance may be an option only after local radiation therapy and if AFP returns to normal. AFP returned to normal as expected and radiation therapy began 4 weeks after surgery, giving the testicle time to heal. I completed the radiation last week. The side effects of the radiation were negligible. Fatigue and soreness were noticeable but minimal when considering the big picture.

    Today, I feel great. My next CT is scheduled for December. Perhaps I can find some eggnog flavored contrast? Ah yess, eggnog – contrast doesn’t sound so bad afterall.

    I feel an obligation to share my experience. Particularly with the partial IO since I had dificulty finding much information on the topic. I would be happy to help anyone in the TC fight as this site has been so helpful to me.

    -Rover (Chris)
    TC 1 10.18.2005
    Left I/O, Stage IA (pT1)
    Normal Markers, No VI or LI
    Teratoma, Yolk Sac
    Surveillance

    TC 2 9.12.2006
    Right Organ Sparing I/O, Stage IB (pT2)
    ^Markers, LVI, ITGN @ margin
    Embryonal Carcinoma, Yolk Sac, Teratoma
    RTx10 18Gy testicle only Complete 11.1.2006
    Surveilling Again, HRT

  • #2
    I could of shed some light for you but I was in the same boat....wondering and waiting. Glad to hear things are going well for you. Sounds as though you have the right attitude! welcome to the "club"!
    Brian
    diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

    Comment


    • #3
      Great story and valuable information for others! Thanks for sharing.
      Lori and Jon
      Diagnosed 5/22/2006
      I/O 5/26/2006, Stage 3, Good
      Teratoma (Majority), Seminoma (10%), Yolk Sac
      3xEP then determined not working
      HDC w/stem cell transplant 8/16/06 to 9/25/06
      Chest and Neck surgery 10/9/06 - immature teratoma
      RPLND 11/16/06 - immature Teratoma
      2/29/2008 - markers continue to be normal!
      9/16/2008 - released from Dr. Einhorn's care

      Comment


      • #4
        Welcome, Rover! I'm glad you "uncloaked." Thanks for sharing your very interesting story. Do you have more details about why radiation was appropriate? You don't usually hear about that with non-seminoma, but this is clearly not a "usual" situation.
        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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        • #5
          Thanks for sharing your story. And, congratulations on your successful treatment!

          Hopefully I will never need it, but you provided some great information on the partial I/O option for a second TC - when it might be an option and the need to call in the experts because many local urologists might not be comfortable with it.

          I find that knowledge can be comforting - that knowing the options and what might happen helps me not worry about the "what if's" as much. I have printed your post and placed it in my TC file. Thanks again for sharing.
          Right I/O 4/17/06, Seminoma Stage Ib
          RT (15 days) completed 6/1/06
          All clear as of 5/8/09

          Comment


          • #6
            Scott,

            I was also curious about the non-seminoma / radiation connection. Both Dr Bihrle and Dr Einhorn stressed the importance of radiation for the testicle as part of the organ sparing procedure. We referenced an article from Germany titled Organ sparing surgery for malignant germ cell tumor of the testis. The docs also described that although radiation is not as effective for a non-seminoma as chemo the chemo is less effective in the testicle itself because of the "sanctuary" of the testicle. Similar to the blood-brain barrier.

            Pathology did show lymphovascular invasion and the radiation oncologist expected we would treat the first echelon of lymph nodes. Indiana said no. Radiation would be for the testicle only. Any spread to the nodes would be treated separate with BEP and or RPLND.

            This second diagnosis was September 12, 2006 after clean labs and CT August 21, 2006. My Hematology Oncologist expected we would do 1-2 BEP based on the path report. Again, Indiana said no. It appears (and I’m guessing) Indiana has some level of comfort with the recent August CT and with the fact AFP returned to normal after the I/O. For now – no BEP.

            Next CT is December 18 so jingle bells – no balls about it.

            -Chris
            TC 1 10.18.2005
            Left I/O, Stage IA (pT1)
            Normal Markers, No VI or LI
            Teratoma, Yolk Sac
            Surveillance

            TC 2 9.12.2006
            Right Organ Sparing I/O, Stage IB (pT2)
            ^Markers, LVI, ITGN @ margin
            Embryonal Carcinoma, Yolk Sac, Teratoma
            RTx10 18Gy testicle only Complete 11.1.2006
            Surveilling Again, HRT

            Comment


            • #7
              Spoke to the radiation onc during a follow up the other day and looked at a more recent article that clarified some things.

              The article, Partial orchidectomy for malignancy with consideration of carcinoma in situ Jan Feb 2006, described that CIS / ITGN is found contralaterally about 5% of the time and that CIS leads to invasive carcinoma within 5 years 50% of the time.

              So it seems that approximately 2.5% of the TC population would be at risk of getting TC twice? Of course I probably shouldn’t do that with the numbers.

              Anyway, the article also describes that when CIS is present, local radiation therapy is recommended; this retains potency but destroys fertility.

              Also mentioned that some are treating with chemo (specifics not stated) in an attempt to preserve both potency and fertility. But the unwritten suggestion might be that it is not yet proven as effective. Lastly it is important to know that the partial I/O in not practical for every case.

              -chris
              TC 1 10.18.2005
              Left I/O, Stage IA (pT1)
              Normal Markers, No VI or LI
              Teratoma, Yolk Sac
              Surveillance

              TC 2 9.12.2006
              Right Organ Sparing I/O, Stage IB (pT2)
              ^Markers, LVI, ITGN @ margin
              Embryonal Carcinoma, Yolk Sac, Teratoma
              RTx10 18Gy testicle only Complete 11.1.2006
              Surveilling Again, HRT

              Comment


              • #8
                Originally posted by Rover
                So it seems that approximately 2.5% of the TC population would be at risk of getting TC twice?
                That's in the right ballpark, anyway. I've usually seen an estimate of 3-4%.
                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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                • #9
                  Question

                  Question?
                  Please do not take this wrong I am kinda uninformed about alot of this cancer stuff but--
                  I am not sure why saving the testical is so important. I would feel better if any tissue that had cancer was removed from my body. Of course, I am not the one that is going through the procedure.
                  >
                  I had my left testical removed and have really experienced very little problems. Does removing both testicals create a serious problem? What side effect would a person experience?
                  >
                  I just feel like any tissue that had cancer would be better off removed from my body. And if I had it to do over again I would request my lumph nodes to be removed instead of the chemo supposely killing the cancer cells.
                  >
                  Again do not take this like I am half-baked or something, I just really do not know and am trying to learn.
                  thanks!
                  Stage II seminoma and nonseminoma cancer 2005. HCG was 21,000.00 when it was suppose to be below 5.0- Lost one testical, 4 rounds of BEP, cancer free since last CT-Scan. But I was stupid. I let it go for nearly a year before seeing a doctor. If I had known about this site in 2004 I might have avoided all this!

                  Comment


                  • #10
                    Besides the psychological effect, the main physical effect is the body's loss of its testosterone factory. With both testicles gone, testosterone replacement therapy is required for the rest of your life. Too little testosterone may cause fatigue, depression, hot flashes, osteoporosis, and loss of libido.
                    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
                      Fertility, too, of course, is a factor. I should have mentioned sperm production, not just testosterone.
                      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


                      • #12
                        My primary goal was to avoid HRT...for the rest of my life and for all of the reasons Scott listed. Fertility was not an issue. We have 2 incredible boys. Also the process of HRT isn't all that appealing to me, shots, gel, yuck

                        There are worse things than TRT so we were always prepared to do the full I/O and TRT if needed. If the MD couldn't get clear margins, if blood flow was compromised or if something just didn't look right we wanted the surgeon to take the whole thing. We prepared for that possibility by getting testosterone levels done before surgery. This might make it easier to zero in on my natural levels should we need TRT. They came back on the low side of normal but it's tough to say if the testicle can really do its job with a tumor growing in it?

                        At some point down the road I may still need TRT. It's not clear if the damage will affect the testicle long term.

                        Today, having 80% of 1 testicle is no different than having 1, or 2. I consider myself fortunate.

                        -chris
                        TC 1 10.18.2005
                        Left I/O, Stage IA (pT1)
                        Normal Markers, No VI or LI
                        Teratoma, Yolk Sac
                        Surveillance

                        TC 2 9.12.2006
                        Right Organ Sparing I/O, Stage IB (pT2)
                        ^Markers, LVI, ITGN @ margin
                        Embryonal Carcinoma, Yolk Sac, Teratoma
                        RTx10 18Gy testicle only Complete 11.1.2006
                        Surveilling Again, HRT

                        Comment


                        • #13
                          I got my ALL CLEAR today!

                          I’ve had plenty of labs to confirm afp returning to normal but this was my first CT since the partial I/O and local radiation.

                          My wife Sara doesn’t read this stuff but she gets a huge Thank You. I’ve been a bit jumpy the last couple of weeks in anticipation and she has been incredible. Also thank you to everyone here at the forum.

                          My onc spoke to Einhorn and confirmed we are starting again with year 1 nccn surveillance protocol. Piece of cake.

                          I’m psyched. Bring on the Christmas!

                          -chris
                          TC 1 10.18.2005
                          Left I/O, Stage IA (pT1)
                          Normal Markers, No VI or LI
                          Teratoma, Yolk Sac
                          Surveillance

                          TC 2 9.12.2006
                          Right Organ Sparing I/O, Stage IB (pT2)
                          ^Markers, LVI, ITGN @ margin
                          Embryonal Carcinoma, Yolk Sac, Teratoma
                          RTx10 18Gy testicle only Complete 11.1.2006
                          Surveilling Again, HRT

                          Comment


                          • #14
                            Congrats! That's the best Christmas present you could've received. Here's to a happy and healthy New Year.
                            Left I/O - 7/1/05
                            Non-Seminoma / Stage IIB
                            3x BEP - 8/15/05 - 10/11/05
                            Surveillance - 11/1/05...

                            Comment


                            • #15
                              Wonderful news, Chris! We'll look forward to more good reports in the year ahead.
                              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

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