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  • #16
    Hi, Nick,

    We’re you staged NSGCT stage1 August,2001? Why they staged you to III later? Because of relapse? Is this normal after relapse to re-stage?

    BRs

    Amy, Ryan’s mumm
    Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

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    • #17
      Originally posted by Smartie View Post

      Just to point out, I think there is confusion here. Raised AFP certainly would be cause for concern. It is LDH that is the non-specific marker. :-)
      Yes, I screwed up.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

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      • #18
        Sounds like your skirted a more serious staging. You won't be considered "Cancer-free" till your 5th year all clear CT scan/bloods. That's the cut off they give to most for relapse, although there's a small possibility it could resurface after that mark... it's just an extremely small chance. I wish you the best, but it sounds like you're on the right path. Don't do what I did, and miss CT scans here and there, the anxiety and build up will eat you alive. I made it the full 5 years on Stage 1A pure seminoma and with no signs of relapse, but I still wonder sometimes if I should get more follow ups just to be cautious.
        Dx: 10/4/10
        Blood Results for tumor markers came back Normal.
        Surgery/ Left I/O: 10/26/10
        11/2/10 - Pathology report came in, 100% seminoma with no evidence of cord invasion. 3 foci, 1.1cm, 0.6cm, and 0.3cm.
        11/3/10 - CT scan of Pelvis and Chest is clear, no abnormalities.
        11/18/10- Surveillance
        10/26/11 - All Clear

        Comment


        • #19
          Originally posted by Ryan Bi View Post
          Hi, Nick,

          We’re you staged NSGCT stage1 August,2001? Why they staged you to III later? Because of relapse? Is this normal after relapse to re-stage?

          BRs

          Amy, Ryan’s mumm

          Hi Amy.

          Yes, it was because of a relapse during surveillance following orchiectomy. I would think it'snormal to use the staging system to describe a the situation arising from a relapse. I'm not sure anyone said to me, "you are now stage iii," they probably just described what was happening.

          Best regards
          Nick

          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

          Comment


          • #20
            Thank you Nick for your reply.

            I would like to take the original stage even with relapse. Otherwise the cure rate goes down and I will have more anxious.

            Best Regards

            Amy, Ryan’s mum
            Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

            Comment


            • #21
              From one pilot to another:

              Hey, just to let you know, I went through seminoma in 2015 and it was stage one and was able to get a new medical certificate a few months later. I relapsed last year in December (two days after I passed a 135 checkride in an XLS) and had to go through three months of BEP after I went stage 2c. I felt like the world was falling apart.

              I thought everything was done, but I had good doctors and friends and got through chemo. After I got a clean bill of health in March, I started talking to my AME as well as AMAS (aviationmedicine.com). With guidance and some patience and a good AME, I was able to get a special issuance in July of this year and I am flying again.

              Facing cancer was one thing, and like you, I understand the battle with the FAA can be another mountain. Going through things like this, people tell you to do things you love, but if love flying like me, you are heartbroken in that you worry you cannot do what you love because of something you never could control.


              I will never forget my journey. Every few months I go through new fears as I have new tests and doctor appointments, but this journey has also made me a stronger person. You will be stronger too.

              Please feel free to PM me if you you need any help or want a more specific account in the the aviation stuff I did to get back in the air.
              Last edited by aerobadger; 11-12-18, 10:24 PM.
              11.09.15: Mass found in right testicle
              11.13.15: Right I/O
              Late Nov. 2015: Stage I seminoma: Active surveillance
              12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
              Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
              January 2018: Port installed, 3xBEP started
              March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
              May 2018: First post-chemo imaging planned

              http://www.instagram.com/joshrunsaway

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