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Update on liver density, just discharged following RPLND @ IU--more questions

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  • Update on liver density, just discharged following RPLND @ IU--more questions

    My 22 yo son just got the call from Dr. Einhorn that they found no teratoma and no live cancer following his RPLND last week. We know this means that he didn't need the RPLND, but we are so happy about the path that we don't care right now. Of course, my son didn't ask 'what's next'. Can anyone help with the protocol at this point? More scans, blood work? When? Dr. Einhorn said 'done'. Does that mean done?

    From my previous post on liver density, the IU TC board all agreed that they did not believe the liver was involved despite what treating facility was indicating. They discussed bringing in the liver surgeon during the RPLND, but decided against it the day prior based on other factors including tumor marker levels and what they were seeing in the scans. They said they 'looked' at the liver during the RPLND but everything appeared normal. Can’t say enough good things about Dr. Cary. Please find a way to go to him if you need RPLND.

    Kat, Mom of Jacks
    June 2018 I/O right testicle, Pre-surgery HCG = 257, AFP = 15
    June 2018 Path = 95% EC, 5% Tert & FYS, Four nodes in lungs ranging 6 - 10 mm, 5 x 2.5 cm node/s in abdomen, two areas of liver density, Stage IIIA or C
    July 2018 - Midway scans lungs clear, abdominal 2.5 cm x 2, Stage III-A, treating facility says BEP x 4 (IU says 'no metastases in liver' BEP x 3)
    Aug 2018 - Completed BEP x 3, Post-chemo HCG = <3, AFP = <1.5
    Sept 2018 RPLND @ IU
    Sept 17 2018 –Einhorn says ‘no teratoma or live cancer found’ (14 lymph nodes removed)

  • #2
    Great news! I would feel the same - RPLND is a tough surgery but it is great to know that there is not any cancer left. I'd expect chances of recurrence to be quite low given the result.

    You can register and download the nccn guidelines if you want to follow along. Basically he should be put on a periodic schedule of labs and scans over the next 5 or so years. They will start out at every 4-6 months and eventually taper to annually, and after roughly 5 years the current guidance is you are done watching and the chance of a recurrence is too low to be worth further tests.

    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: begin 4xEP, end 9/18/15
    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!
    4/15/19: all clears up to this date!


    • #3
      Yay on the no Teratoma or live cancer!!! Since there was neither the new NCCN guidelines at least for nonseminoma stage 2-3 has one CT scan at 4 months post op and that is it. But definitely double check, my son had Teratoma in RPNLD pathology so he had to have more post op scans. Your son will have blood work if Nonseminoma stage 2-3, 1st year is more frequent depending on whether IU adheres to plan to the T. My son is at every 3 months and is 15 months post chemo-RPNLD. Keep us updated.
      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.