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Stage Ib treatment options..what a dilemma. Help??

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  • #16
    Shabby, glad to hear that it went smoothly. By now you must be completely recovered?

    I will post an update about my decision here.
    I was leaning towards BEPx1 but eventually I decided to go with surveillance.

    I completely agree with the posts above -- since it is a coin toss in terms of chances, the decision should be done based on personality and life situation.

    I spent more than a week debating inside what to do, but when I decided to go with surveillance because it just felt right.
    Eventually I realized why it felt right: I am ok with "paying" for consequences and problems at hand. If I have a tumor in my lymph nodes, then fine I will "pay for it", I will do BEPx3 and maybe RPLND later. However I am not ok with sacrificing my health up-front, even if it is a smart thing to do.

    I did first surveillance CT on Oct 18 and it came out clear. Next CT will be in mid-January, we will see.


    • #17
      An update on my situation.

      I did the surveillance CT in late January and it showed an enlarged 2.7 x 3.5 x 4.5cm lymph node and a nodule in the lung 7 x 5 mm .
      I had to do BEPx3. It went pretty well, no major side effects. The only thing is my fingers feel bruised, not sure if that is a sign of neuropia, but I hope it will fade out. Also right before 3rd cycle I had 0.3 ANC and it was a bit scary. I was very cautious, wore a mask, washed my hands all the time and did not go to public places at all.

      I did an abdomen, a pelvis MRI and a lungs CT right after the final bleo. The lymph node shrinked from
      2.7 x 3.5 x 4.5 cm to 1.8 x 1.3 x 2.6 cm. And the nodule in the lung shrunk from 7 x 5 mm to 6 x 2 mm.

      I will have to do a RPLND since lymph node is still quite large. I am trying to schedule it in IU with Dr Cary. That is pretty much where I am right now. Not sure what to make of the nodule in my lung.
      Dr. Einhorn confirmed that I need the RPLND, he also said that he doubt I need a lung surgery, but I do not know his reasoning about the nodule.
      Last edited by ColoradoGuy; 04-15-19, 09:32 AM.


      • #18
        Something was wrong with the forum yesterday. Just want to bump up the thread.


        • #19
          Sorry to hear about your relapse. Sounds like you are approaching it well though. What was your pathology?
          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!


          • #20
            Hi Coloradoguy,

            Dr.Cary is an excellent RPLND expert. My son was operated by him 14th March. Well recovered. For lung node, normally less than 8mm is harmless, but I don’t know how to judge from your case , since it enlarged in meantime with abdomen one. I would contact Dr.Einhorn asking for a visit, make a clear picture will be easy for finding a peace of mind. I wish a good luck to you! Keep us update please.

            Best regards

            Amy, Ran’s mom
            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


            • #21

              My pathology was 100% EC.

              @Ryan Bi

              Thank you. It is a good idea, I will try to schedule with Dr. Einhorn since I will be in Indiana anyway.


              • #22
                I would not be surprised if the nodes come back as necrotic tissue, but need to be sure at this point, lung nodules are more likely to be nothing, but further testing is a good idea to be certain.

                Last edited by Davepet; 04-17-19, 03:40 PM.
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP