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My 1B nonseminoma

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  • #16
    My recollection is that both the oncologist and the urologist suggested the risk of relapse after RPLND is in the 5-10% range. Though, I just re-read my notes from the urologist consult and I wrote a random "20% recurrence" without any additional comments - but it's near my notes of our discussion of what happens if a biopsy shows some positive nodes, so it might be the risk after a stage II(A?) diagnosis.

    The CT scan was July 7 (2 days after I/O), so was a while ago now. I've had a few blood tests in the last 2 months; the last one was just under 2 weeks ago (all markers normal).

    The surgeon thought a 3-4 day hospital stay and that I'd probably be good enough to go back to work after ~3 weeks (I have a desk job). I'll probably go stay with family for a few days after I get out of the hospital. Still want to get home as soon as I can, but I guess we'll see how things go.

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    • #17
      ARCH~ Wishing the best on your upcoming RPLND. Usually, barring complications you can expect 3-4 days recovery in the hospital. It used to be up to a week, but they tend to move you home ASAP at least our recent experience. In fact they were trying to discharge my son less than 24 hours after his post chemo open RPLND No joke, he was not even in a room until 7pm the night of his surgery and they were talking about discharging by 2pm the next day. They will have you up out of bed if not the same day, early the following, and moving, walking the room, halls.
      17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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      • #18
        An update. I had the surgery last Monday. Was discharged on Thursday around dinner time (so only in the hospital for ~3 days) and am staying with family. I was anxious to get away from the nurses and doctors coming in at insane hours of the morning. (Why do the urology residents think it's ok to do their rounds at 5:30 AM I will never understand.) Not that I was getting much sleep anyway. The pain has been tolerable since I got out of the hospital; haven't taken the Oxy they prescribed, just the acetaminophen and ibuprofen combo. They prescribed this noxious medium-chain triglyceride oil that I haven't been able to use much of - it's to supplement the low-fat diet. The low-fat diet hasn't been too much of a shock, but I do miss some things a bit. It's only ~3.5 weeks left until I can eat normally again.

        At any rate, the surgeon said he didn't observe any obviously enlarged lymph nodes. He said they were able to get a peek as they went during the surgery, so he ended up only taking the right side and the top part of the left side. He didn't feel it was necessary to take the whole left side. He was pretty optimistic that they won't find anything. Good sign that none of the nodes were enlarged, so we're optimistic. But we'll get the official pathology report early next week. He also thought he was able to fully spare the nerve. I'll find out in a few weeks.

        Hopefully I'll get on to "light" surveillance soon.

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        • #19
          Great to hear!
          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

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          • #20
            Originally posted by Arch View Post
            (Why do the urology residents think it's ok to do their rounds at 5:30 AM I will never understand.)
            Because you are just a training tool, not a person, as far as they are concerned.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #21
              Originally posted by Davepet View Post
              Because you are just a training tool, not a person, as far as they are concerned.

              Totally. It's usually the residents that are pre-rounding that do the earliest work and then present to the Attending doctors who round later. In surgery this is done super early. I hate how the medical profession does this. There's no understanding of patient comfort and the need for rest.
              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

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              • #22
                Glad all went well, and you are healing at home. Try and get walking now, it definitely helps with post RPLND recovery. Interesting you were prescribed a low fat diet, as several TC centers are no longer prescribing that post surgery. Keep us updated when you get pathlogy.
                17 year old son 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: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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                • #23
                  Yeah, if they ask for feedback I'll have to say something about hours. I just got a survey request for the I/O back in July (different hospital).

                  Pathology report looks good, if I interpret it correctly. The electronic system won't post properly for me, so the nurse sent me a secure message with just the Final Diagnosis section. It basically adds up to 21 "benign lymph nodes". There was also the spermatic cord where they say "uninvolved by tumor." I'll be asking for a hard copy of the full report during the follow-up next Tuesday. So I'm happy about that.

                  I can get away without the pain meds during the day now, as long as I take enough time to sit and rest the muscles. Still taking them at night (hope it helps me sleep).

                  I'm finding that I do miss some of the foods with higher amounts of fat. I'm tracking my diet as best I can so I don't go over. I have been able to treat myself a little bit, but not too much. It's amazing how much fat is in some good food. I'll be asking about the diet at the follow-up. A whole month seems like overkill if they're just trying to prevent lymph leakage. I've so far only found that I can take the MCT oil when I put it in my oatmeal, so I haven't been taking as much as recommended. The sooner I can get back to normal diet, the happier I'll be.

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