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Post BEP x 3 Surveillance schedule too lax or just right?

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  • Post BEP x 3 Surveillance schedule too lax or just right?

    Hi there, I'm no stranger here so I'll just get right to the details! I started with surveillance and a non-seminoma stage 1b diagnoses, relapsed into stage 2a at the 3 month mark, and went through BEPx3. A month after chemo, tumor markers were normal and the CT scan showed no residual masses. I had an additional 3 followup appointments at 2 months apart and tumor markers have been since been normal. In total, I am 7 months removed from chemotherapy with normal markers. I was told further scans would just be unnecessary radiation (which I'm on board with). My oncologist scheduled my next appointment for 6 months out and is very confident I'm rid of this disease. Statistically speaking, I know I am too, like 99% sure. But as we know our human emotions trump our logical side. It won't keep me up at night, but is 6 months too far out considering I'm still in my first year following chemo? I'm also familiar with the NCCN guidelines, which definitely take a more aggressive followup approach (every 2 months the first year). My oncologist (who's great), on the other hand, takes a more conservative approach. My oncologist said I could come in at the 3 month mark if I really wanted to. I have to keep in mind that if I do go for an additional appointment + blood draw at the 3 month mark, it's like $400 even with insurance (deductibles...). I'm extremely grateful for where I'm at.

    10/26/17 AFP 1.0 (Diagnosed TC Stage 1B, Pure Embryonal Carcinoma; Normal Markers)
    12/11/17 AFP 0.9 (After Orchiectomy; Normal Markers)
    2/22/18 AFP 4.95 (Relapse at 3 month surveillance with 2 nodes both under 2cm; Elevated Markers)
    3/5/18 AFP 5.91 (Taken at start of BEPx3; Elevated Markers)
    3/26/18 AFP 1.8 (Start of cycle 2)
    4/16/18 AFP 1.9 (Start of cycle 3)
    5/30/18 AFP 1.4 (After cycle 3 + 4 weeks removed from chemotherapy; Normal Markers)

    ***CT Scan Shows NO RESIDUAL MASSES and Tumor Markers NORMAL***

    8/1/18 AFP 1.2 (+2 Month followup)
    10/1/18 AFP 1.2 (+2 Month followup)
    12/3/18 AFP 1.6 (+2 Month followup)
    5/1/13 ..... (+6 Month followup)

    -----------------------------------------------------------------------

    tdlr; 7 months removed from chemotherapy with normal markers and no residual masses on CT scan. Is 6 months until next blood draw too long?

  • #2
    I would say tumor markers and CBC draw every 3 months. As for CT scans last time i spoke with Dr Einhorn he stated only if warranted.
    You can always look at the nccn guidelines and give that to your Onco dr.
    But remember your a patient/customer and if you feel he should do more then you certainly have the option of going with another provider.
    Again check nccn guidlines and have your Dr stick with that.
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

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    • #3
      I'd probably do a bloodwork at 3 months, and then continue with he 6 month checkups if that turns out good.
      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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      • #4
        My son was 2A - did BEX 3X and finished Nov. 2017. March 15 2018 cancer free and was told to keep bloodwork at every 2 months and scans every 6 months. September 2018 everything still good and now told to do blood every 3 months and scans every 7 months. Not sure on when he goes back to see doctor I believe every 3 months. I just wanted to give you another point of reference.
        Last edited by Ann; 12-19-18, 01:02 PM. Reason: typo

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        • #5
          Thanks for all the advice. For peace of mind, I rescheduled for 3 months out rather than 6.

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          • #6
            Not sure what NCCN ays, but i had 6 month scans the first year or two,annual scans for the next three. THAT is the conservative approach, your doc is, I believe, on the risky edge of things with no more scans this early after chemo. Recurrence is most likely in the first year or two. If it happens, catching it early is very important.. The low risk from the scan rads is worth it last I heard.....

            Dave
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #7
              Originally posted by Davepet View Post
              Not sure what NCCN ays, but i had 6 month scans the first year or two,annual scans for the next three. THAT is the conservative approach, your doc is, I believe, on the risky edge of things with no more scans this early after chemo. Recurrence is most likely in the first year or two. If it happens, catching it early is very important.. The low risk from the scan rads is worth it last I heard.....

              Dave
              Yes nccn calls for 2 scans first year, blood work every two months. I cross-checked the no imaging approach with einhorn, and he says at most one at month 6 and one at month 12. He says if no residual masses on scan, no scans at all is also fine.

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              • #8
                I suppose confidence in treatment is building as more & more guys are found all clear years down the road. I know some guys are different, but I felt the scans helped me avoid paranoia at every ache & pain...
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

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