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  • New to forum/ want to let everyone know about my current situation

    Diognosed in early may with stage IIA non sem mix germ cell. 50% teratoma 40 % yolk 10% ec. Currently in treatment just finished round 2 of bep chemo " 1 more round to go" after round 1 HCG went from 45 to under 1, AFP from 161 to 22.6, LD 180 to 140.....

    posting this because I just want to hear from so people who hAve gone through this as well. I'm 22 and just finished college so this is really hard on me, as it is for anyone at any age..

    Also I know RPLND is definetly
    possible but would love to avoid. Before starting chemo had one large lymph node under 2cm

    Met with urologist today because I thought something was wrong in other testicle and ultrasound showed it being a cyst... he seemed very optimistic about everything...

    Would love some feedback about my situation... thanks so much!

  • #2
    That's good the other just had a cyst! In terms of treatment hopefully your won't need RPLND, but I'd mentally prepare for that possibility since you had a high percentage of teratoma in your original histology. That's not to say it's definitive by any means. I've seen people with higher percentages avoid the surgery after chemo.

    One thing you have going for you is at 2A you caught it early and with teratoma being slow growing it might not have had time to spread where as that EC component did and it is extremely sensitive to chemo.

    Any idea when your post chemo scan is? I'm in a similar situation to you right now. Different histology (100% EC) but staged at 2A and really want to avoid surgery. I just finished cycle 3 last week and am now in the waiting phase. My scan is a week away and at the end of the day that's the only thing that will give us answers about that surgery question. Wish I could tell you you will avoid surgery, but I can't even tell myself that and I had no teratoma present. I will say it's not definitive by any means and at 2A you caught it early and at any rate you will be cured regardless, just a matter of how, and in a year this will all seem like it was a bad dream.
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. Will retest in a few weeks.

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    • #3
      No idea when post chemo scan is. Some people I have asked waited a week, others a month and 3
      Months. I would love to do mine ASAP, no a fan of waiting so long. Meet with oncologist today for lab work and end of cycle 2 follow up so will ask.

      And I figured with the high teratoma there is a good chance for the RPLND. But it's nice to hear there is a chance I still might not need it. I have criminal justice degree and plan on working in law enforcement. I just hope an RPLND doesn't hurt my chances of doing that. Thanks for the reply, hope your scans turn out great!

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      • #4
        Originally posted by MTS1994 View Post
        I have criminal justice degree and plan on working in law enforcement. I just hope an RPLND doesn't hurt my chances of doing that. Thanks for the reply, hope your scans turn out great!
        I wouldn't think so. Barring any major complications, you will have 100% recovery after RPLND. Getting to 100% goes slow at first (the first 2 weeks suck), but then it rapidly improves once your incision heals up. Within a couple months you can be back to intense physical activity, and after 6 months, other than the scar line, you'd never realize you had one.
        6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
        6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
        7/7/15: bHCG 56, AFP 42, LDH 322
        7/13/15 - 9/18/15: 4xEP
        10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
        10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
        4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
        4/20/16: RPLND @ IU - teratoma only!
        5/10/17 all clears up to this date!

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        • #5
          I'll chime in and second what Biwi said. I had my RPLND 8 weeks ago today and I'm nearly 100%. I'm lifting heavy at work again and able to do most exercises. The incision is still pretty tight so movements like pull ups that either stretch the abs or require a lot of ab involvement can be a bit uncomfortable, but not painful. Hopefully you can dodge the surgery if that is your wish, but it won't be the end of the world if it comes to it. Good luck and keep us updated on how things go!

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          • #6
            Post chemo scan will be 4 - 6 weeks from now. Last day of chemo is Aug 1 so not to bad of a wait.

            Oncologist feels confident with Tumor markers dropping he expects good scan results.

            Even with that I'm just super anxious about all of this but really glad I'm almost done with chemo. It's been a long 3 months and I'm really hoping to put this all behind me very soon!

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            • #7
              MTS1994~ sorry to welcome you here. August 1st is almost here. The next blood markers, and CT Scans will hopefully be great. I can understand fearing post chemo RPNLD, my son Grant did. He had the surgery on May 8th (found lots of Teratoma), and attended Boy Scout Camp first week in June, and he is now back to mountain biking,& kayaking.
              Keep us updated, and if it matters my son says chemo is a lot worse than the RPNLD.
              17 year old Grant dx 12/21/16
              pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
              pre/o CT Scan 12/22/16 normal
              r/o 12/22/16
              Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
              PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

              -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
              2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
              BEP x 3 1/27/17
              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: pathlogy Teratoma , 3 large masses removed

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              • #8
                MTS1994 at least you can take some comfort in not being alone. We will get through this though! Chemo will be done before you know it and this bad dream will be behind both of us! Our cases don't seem uncommon so we should expect a common result which for TC means cured! This will be behind both of us very soon!
                3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. Will retest in a few weeks.

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                • #9
                  Emailed Dr. E and he responded pretty quick saying he believes close to 100 % cure rate in my case. He also mentioned the chance of RPLND with 50 % teratoma in my pathology. ( am mentally preparing for this)

                  It's really nice hearing him say that. My enlarged node in CT was 1x4 x 1x5 CM... But that Ct was in early may when I was diagnosed.The more I read about teratoma and yolk sack the more it's freaking me out.. I try not to think about it but it's almost impossible. My HCG has dropped to under 1 and AFP is getting close at 24.6 and that was after cycle 1. I start round 3 tomorrow. Looking forward to getting this last long week behind me!!

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                  • #10
                    Tumor markers after Cycle 2;
                    HCG; Under 1
                    AFP; 4.6
                    LD; 156

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                    • #11
                      That's good news!
                      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. Will retest in a few weeks.

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                      • #12
                        Looks like everything is going well, as well as can be expected, good luck!!

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