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Non-seminoma follow-up in the UK

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  • Non-seminoma follow-up in the UK

    Hi everyone, I was diagnosed with 90% EC and 10% yolk sac in March 2018, with a few mets to the abdomen (~4.5cm). There were also non-specific lung opacities (ground glass nodules) that showed up in two CT scans prior to starting 3xBEP, but these disappeared by the end of the chemo.

    I had a CT scan in July, and this showed a remaining lymph node at about 1.4cm diameter. I was advised by two separate teams of doctors that another CT scan should be conducted (rather than going straight for the RPLND).

    The CT scan in September showed that the lymph node had shrunk to below 1.0cm, so I have been on follow-up since in the UK. However, after asking around, it seems that it is not standard here to conduct CT scans for follow-up, except for in the 5th year. However, the NCCN guidelines state that CT scans should be conducted twice a year for years 1 and 2, and then annually for years 3, 4 and 5.

    Does anyone have thoughts on whether I should try and push my oncologist for a CT scan this year, especially given the fact that the residual lymph node mass took longer than expected to shrink to normal size? I wonder if this could increase the probability of a teratoma recurrence, which wouldn't be picked up on a blood test.

    I also recall that Mike posted some papers about whether recurrence is detected via CT or blood tests for stage 1 seminoma. Do any such papers exist for stage 2 non-seminoma? Thanks!

  • #2
    I would probably try to have my docs follow NCCN, or give me a compelling argument on why to not have the scans.
    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!
    9/27/18: all clears up to this date!

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