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Surveillance schedule

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  • Surveillance schedule

    I‘ve been diagnosed with a Stage 1A Embryonal Carcinoma (EC, 100%) a month ago, and chose active surveillance. I feel a bit conflicted about the suggested surveillance plan though, and wonder if I should push for changes in my case.

    The treatment protocols distinguish two cases: low risk (with LVI, chance of recurrence 15-20%) and high risk (with LVI, chance of recurrence 40-50%). Since I don‘t have LVI, I fall into the low risk group, where the surveillance protocol has blood tests & xray every 2 months, and CT scans after 3, 12, 24, 36, 48 months.

    In my case blood markers were negative before the orchiectomy, so the blood tests might not be helpful. Also, with 100% EC my risk for recurrence is more around 30%, so a bit higher than the average risk without LVI (but lower than the high risk group). With the large gaps between scans, especially between month 3 & 12 and 12 & 24, I am a bit worried about having the cancer grow unchecked (and EC does seem to grow rather quickly, although I haven‘t found any numbers).

    The only downside from more frequent CTs seems to be radiation. From all I‘ve read there is a slight risk increase in dying of cancer at some pointfrom doing more CTs. However, the risk of having more advanced disease in case of a relapse seems to be more direct and more problematic..

  • #2
    I haven't seen the most recent NCCN guidelines, have you checked to see if they are being followed? That schedule is a lot lighter than mine was, but thngs have changed over the last 9 years.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP


    • #3
      Thanks, I had another look at the NCCN guidelines. They use lymphovascular invasion or invasion of spermatic cord or scrotum as risk factors for non-seminomas. Without those factors (my case), they suggest a CT every 4-6 months in the first year, 6-12 months in the second year. So a bit more frequent, about one more scan in the first and the second year. My country has its own guidelines, but I was wondering if I should ask for changes. Most guidelines mention explicitly that these may need to be adapted in individual cases.

      Do you know Is it common to adapt the schedule if some modalities of the check (like tumor markers) are likely to fail? (The studies that I saw seem to suggest that recurrences are mainly detected through tumor markers or scans.)

      Also, how do you see the added risk of CT radiation with more scans? The best estimate I could find was from the FDA website, and it mentions a life-time increase of 1/2000 of dying of cancer (i.e. according to that source about 20% of people die of cancer, so your baseline chance is 400/2000. For each scan that probability goes up by 1/2000, so after 5 scans it’s 405/2000). That seems negligible in comparison to the dangers of the actual testicular cancer I (may still be) currently having. I guess MRI might be an alternative, but I’m not sure how to trade offs in sensitivity/specificity are for that.


      • #4
        I think I'd try to increase the scans in the first year,maybe the second year . Statistically, that is the most likely time for something to show up. While late recurrences happen they are far less common.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP