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Stage 1, 90% embryonal, no signs of LVI....agonizing over next steps

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  • Stage 1, 90% embryonal, no signs of LVI....agonizing over next steps

    Hi everyone,

    I had my orchiectomy on 8/30 (1.5 weeks ago) and pathology report came back last Friday with 90% embryonal carcinoma, limited to testis and epididymis, no invasion into hilar soft issue, rete testis or spermatic cord. No sign of LVI.

    CT scans and chest x-rays both came back clear. Blood work was normal prior to surgery so doctors didn't really use this to measure anything post-op.

    My choices right now are pretty textbook: surveillance, adjuvant 1xBEP, or surgery (which was not recommended by any doctors I've spoken to).

    From what I understand, despite having caught this early, the risk of recurrence with my situation sits at around 30%.

    I'm leaning towards doing 1xBEP in order to bring 30% down to as low as 5%, but I understand that that chance I'm over-treating myself is quite high as well, and the BEP long term effects are still relatively unknown. There are times where I feel 70% of being cured already seems like a good chance to take...but as I have a wedding coming up in 6 months, it would be absolutely devastating potentially to relapse 1-2 months before the wedding and have to call it off, whereas doing 1xBEP now should gives me more control over this.

    I'm also sort of confused as I've been lurking here for the past few weeks and it seems there are a few on here that swear by RPLND over 1xBEP, even though my doctors have told me that in the case of embryonal carcinoma RPLND may have limited effectiveness due to the tendency for it to move around in the body.

    It would be great to get everyone's thoughts/experiences on this. I know that with my staging it's pretty much up to me, but it's been very difficult to for me and my family to decide and any help would be appreciated.

  • #2
    I know it's a hard decision, but at the risk of sounding obvious, I'd say it needs to be whatever you are comfortable with! With same chances, I decided against adjuvant chemo and had a relapse - but it made sense at the time. I'd still make the same choice - you never know if it happens! The key though I would say is not to plan life events around it - it should not affect your decision. Whatever the situation is, you can make it work in the end, even if that means having wedding during chemo or delaying it!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 2 years now!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    3 Things I Wish I Knew Before I Started Chemo
    3 Reasons Why People Disappear From Your Life During Cancer
    Simplify Cancer Podcast


    • #3
      RPLND would cut your relapse risk to maybe 20% if there are nodes found with some cancer in them. So it’s not terribly effective at cutting this 30% risk.

      Note that some small studies (n= approx 75) out of Toronto state that risk of relapse for pure embryonal cell is close to 50%.

      In my assessment I considered my real risk to be between 30-50%.

      Keep in mind there is no wrong answer here! All paths lead to high probability of CURE. Choose what’s best for you and your loved ones risk tolerance.

      PM me, I can email you my collection of research papers on stage 1 TC (focus on pure embryonal)
      Age 31 - Portland, OR
      01NOV16- Pain in right testicle, palpable mass
      13NOV16- R I/O. Markers normal
      27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
      06DEC16 - CT scan clear
      09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
      03JAN17- Ended 1xBEP; start surveillance
      18MAR17-2nd pathology report shows 90% EC , 10% seminoma


      • #4
        Thanks guys, and what would be my window for deciding? It's been 10 days since surgery, I know sooner the better, but would it be too late to wait till Oct 1 to start treatment if I do decide to move ahead? Reasons for waiting are mostly personal.