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My Testiculuar Cancer Story- (VIDEO) + introduction

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  • My Testiculuar Cancer Story- (VIDEO) + introduction

    Hi everyone,

    My name is Jon, and I'm well on my way to recovering from my T-C orchiectomy that was about two weeks ago. It was a scary scary time. I have a Youtube Travel Channel, and rather then tell my story with words.. I'm going to attach a link to my video where I talk about the lessons learned and my actual story. The video was very tough to film, but I know it's raised a lot of awareness about this topic! I look forward to seeing your replies, and hearing your stories as well.

    All the best to everyone, to stay healthy and to keep raising awareness about our struggle.


  • #2
    Hey Jon, nice video and welcome! I'm glad you caught it early, as you say a good prognosis and hopefully now it'll be back to normality for you! Also good on raising awareness!
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

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    • #3
      Thanks I hope you stay healthy as well !!

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      • #4
        JON~ Liked your video, very imformative. Glad you are doing well, and that your girlfriend made you seek medical help!!!
        Son Grant
        dx 12/21/16 at age 17

        BEP x3
        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
        Grant is enjoying his senior year in High School Cancer Free!

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        • #5
          Hi Jon

          Great video, I loved the quote. Welcome to the board and congrats on getting surveillance. I wish you many "All Clears"

          Best,
          Daniel

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          • #6
            Thanks Daniel_Eye and Trekga. And I wish you both all clears and health as well !

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            • #7
              Update: They put my story in the New York Post.
              http://nypost.com/2017/05/18/vlogger...ar-cancer-hit/

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              • #8
                Thanks for sharing your story

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                • #9
                  JON~ cool article in the NY Post! It is my 17 year old son who has TC. He had 3xBEP, and than RNPLD 11 days ago.
                  Son Grant
                  dx 12/21/16 at age 17

                  BEP x3
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
                  Grant is enjoying his senior year in High School Cancer Free!

                  Comment


                  • #10
                    Hi Jon! My son is newly diagnosed, 3 days post-op. Our close family & friends know, but otherwise we've been keeping rather quiet about it so far but do plan to work to raise awareness after we come out on the otherside. I did share your video on my facebook profile today and asked my FB friends to do the same, they may not all be aware of our battle, but I want them to start talking to the boys & men in their lives now! Thanks for sharing your story!
                    Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
                    5.10.17 - Initial diagnosis
                    Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

                    5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
                    5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
                    PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

                    Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

                    BEP#1 6.9.17 BhCG:77,721, AFP 34
                    BEP#2 7.3.17 BhCG: 210, AFP: 6
                    BEP#3 7.24.17 BhCG: 19 AFP: 3
                    BEP#4 8.14.17 BhCG: 4.59 AFP: 5

                    8.28.17 BhCG 2.46, AFP 6
                    9.7.17 BhCG 1.78, AFP 3

                    RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

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