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Just diagnosed stage 1b

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  • Just diagnosed stage 1b

    Hi Guys,
    My name is Bobby, I’m 31 years old and just had a right I/O on Thursday 10/4. Let me start at the beginning: back in early May I felt a twinge of pain in my lower right abdomen. That night in the shower while felling the area in question I found a lump on my right testicle. Being the nervous guy I am, and being afraid of bad news I ignored it and went on with my life. Fast forward to the beginning of last week and the pain was back, but this time it felt like I was kicked in the marbles. I (finally) told my fiancée what was up and off to my primary care doctor we went. He felt it and sent me off for an ultrasound. That came back as an almost 3mm mass on my right testicle. The next day we went to see a local urologist who very quickly got me in for bloodwork and a CT scan, as well as scheduled the I/O for 2 days later. Today was my follow up appointment and my results were in. The good news is my markers were all good they were never elevated to start with, and my CT scan showed nothing abnormal and looked clean as well. The bad news is what they took out turned out to be a mixed germ cell tumor. 95% embryonic and 5% seminoma. No invasion of anything outside of the testicle except for being positive for multi focal lymphovascular invasion. Staged as 1B and the tumor is classed as T2. I have been referred to Dr Shienfeld at MSKCC and have an appointment with him 2 weeks from today. My question to those of you who have already been through this, how concerned/worried should I really be? I feel that having a good clean CT and no elevated markers would be a very good thing. My urologist mentioned the RPLND surgery and after reading up on that it has me a bit freaked out. Have any of you had a similar diagnosis? Experiences?

    Thanks in advance, Bobby

  • #2
    Sorry to welcome you Bobby.

    You have a 50% relapse rate. 50% chance you are cured. You have 3 choices.
    1) surveillance
    2) 1 x BEP
    3) RPLND

    I can make an argument for any of the 3 choices. Sloan Ketterring will likely recommend RPLND.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

    Comment


    • #3
      Also, how large was the mass? I'm curious, because 3 mm on the U/S is super tiny. Do you mean 3 cm?
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP

      Comment


      • #4
        Originally posted by RJKD View Post
        Also, how large was the mass? I'm curious, because 3 mm on the U/S is super tiny. Do you mean 3 cm?
        Oops yes I meant 3cm. The mass was measured after being removed and it came in at 2.7cm

        Comment


        • #5
          With clinical stage 1b, predominant embryonal cell component, the probability of relapse is between 30-50%. With pure EC (which you don't have) it may be closer to 50%, but this is so rare than not a lot of statistical info is available.

          The options are:
          1. Surveillance; median time for release (if you do) is 5 months IIRC
          2. 1xBEP, adjuvant chemo; reduces the probability of relapse to <10% but has non-negligible long-term risks (secondary cancers, hypogonadism, CV/metabolic disease)
          3. RPLND; big surgery, but recovery is about 4 weeks or so. Reduces probability to maybe 20% (depends on what they find)

          Note that some centers with experienced surgeons prefer RPLND; other centers without these experts may not prefer RPLND.

          There is no right answer. Some will say surveillance for all stage 1, others prefer a risk-adapted approach where 1b gets chemo/RPLND. These choices are being debated by experts in the field. In the end, the right answer is what's right for your risk tolerance, family situation, etc.

          I chose 1xBEP because it was right for my risk tolerance. In hindsight, I have hypogonadism, some vascular issues in my hand and now tinnitus. I wish I had looked at RPLND more closely when i was debating choices.

          I do recommend you get your testosterone checked in case you pursue chemo in the future, to have as a baseline.

          If you send me a PM I can send you my collection of stage 1 embryonal cell research papers.
          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

          Comment


          • #6
            EC is the trickiest part of that pathology. As the gents above stated, you have the option of surveillance, but EC is a bit more aggressive then something like 100% seminoma. The lack of spermatic cord involvement, and clear markers and CTs is a good sign, but it's not telling just yet, as mets have yet to manifest if they will. Not to make you anymore anxious, but I would only opt for surveillance if you can keep up with the scans... you'll probably need them monthly for a couple of years at least. It's going to be a long, hard road but if you think about it, should recurrence happen, you'd have to seek treatment either way. If you can't live with that sort of anxiety and pressure though, highly recommend RPLND. The issue you face with RPLND is retrograde ejaculation post-op, but if you have a decent doc, there should be very little risk of this. Chemo may cause undesirable changes that could remain permanent if you opt for it. Sperm count could dwindle, or completely vanish indefinitely, you could face several other physical changes as listed above, future heart problems, hormonal, etc. If you opt for chemo, bank sperm if you plan to have kids someday.

            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

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