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Thread: Misdiagnosis!

  1. #1

    Misdiagnosis!

    Apologies for starting a new thread (you can follow previous info at "Pure Chorio Diagnosis")... but figured this was a sufficiently distinct topic.

    In any event MSKCC reviewed my slides post I/O and decided that instead of a p1 pure choriocarcinoma (apparently never before diagnosed anywhere)...

    I instead have a regular old seminoma (stage p2 -- they found some evidence of lymph invasion). No AFP, high hCG. Estrogen producing.

    Seems to make a lot more sense (although I will be sending it out for a 3rd opinion, just in case) but seems crazy to me that a local hospital would feel confident making such an aggressive diagnosis without being extra special sure they were right.

  2. #2
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    I could be wrong but I thought that pure seminoma would never elevate Hcg. And that if hcg was elevated then it should be treated as a non- seminoma.
    _____________________
    Debrah,

    Husband (Cory) age 31..
    2/22/12-Consultation for a vasectomy. Turned away and told to get blood work and ultrasound. Cancer suspected.
    2/24/12- Dx, B-hcg=9670, LDH=250
    2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
    3/12/12- 4XBEP-Start of Round 1( HCG-8100)
    4/2/12 Start of Round 2 (HCG down to 176)
    4/23/12 Start of Round 3 (HCG down to 13)
    5/14/12 Start of Round 4 (HCG down to 6)

  3. #3
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    Frankly, I, too would be surprised with a stage I choriocarcinoma diagnosis. Pure choriocarcinoma is so aggressive, you usually find a met before the primary.
    "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
    11.22.06 -Dx the day before Thanksgiving
    12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! Final follow-up: 07/2014.
    Please support my fundraising efforts for the 2013 Austin LIVESTRONG Half Marathon!


  4. #4
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    Wow, that's crazy, but great news! I've never heard of seminoma generating the HCG values you had, but that's great that it's not pure chorio. My HCG was only mildly elevated -- just 9.

    JPM
    JPM

    March 2011: Right I/O, Stage IA classic seminoma, 5.0 x 4.5 x 3.5 cm
    May 2011: Single-Agent Carboplatin
    Currently ALL CLEAR

  5. #5
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    Quote Originally Posted by Chaps6 View Post
    I could be wrong but I thought that pure seminoma would never elevate Hcg. And that if hcg was elevated then it should be treated as a non- seminoma.
    Pure seminoma does not elevate AFP. Seminoma can exhibit elevated HCG markers, though.

    JPM
    JPM

    March 2011: Right I/O, Stage IA classic seminoma, 5.0 x 4.5 x 3.5 cm
    May 2011: Single-Agent Carboplatin
    Currently ALL CLEAR

  6. #6
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    Quote Originally Posted by Chaps6 View Post
    I could be wrong but I thought that pure seminoma would never elevate Hcg. And that if hcg was elevated then it should be treated as a non- seminoma.
    Seminoma can elevate HCG but the elevation is usually related to tumor burden. My husband had a HUGE tumor in his chest and his HCG was 32.
    Heidi

    Husband - age 51
    10/20/10 - Primary mediastinal seminoma - 10 x 9.3 cm; ß-HCG = 33 (<2.6); AFP = 3.5 (<9); LDH = 274 (100-200 )
    11/1/10 4X BEP
    12/7/10 End Cycle 2 - ß-HCG = 2; AFP = 4.6; LDH = 139 ; 4XBEP changed to 3 as tumor now 2.1 x 3.7 cm
    2/15/11 - Post-chemo PET ; residual 8 mm x 2 cm
    6/29/11 - Lung nodules stable or smaller, chest mass continues to shrink & markers all normal
    Surveillance since 6/11

  7. #7
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    Quote Originally Posted by Chaps6 View Post
    I could be wrong but I thought that pure seminoma would never elevate Hcg. And that if hcg was elevated then it should be treated as a non- seminoma.
    bhcg is sometimes elevated in seminoma, if the tumor markers do not normalize after the I/O then you treat as a non-seminoma (I believe, someone correct me if I'm wrong)

    Anyhow, holy crap, that would be a tremendous relief if that's indeed the case. Crazy to go from a chorio diagnoses to a seminoma diagnoses -- talk about two different ends of the spectrum!
    Patrick
    28 years old
    New York City, NY

    Ultrasound on 1/23/12, I/O on 2/1/12

    Stage IB
    Classical seminoma, 4.5cm, RT invasion, LVI, no spermatic cord margin invasion.
    CT scans clear
    pre op bHCG: 57, post op: 2.4
    On surveillance:
    Clear: 5/17/12, 8/23/12
    11/29/12 -- CT scan shows 1 enlarged retroperitoneal lymph node 20mmx15mm, stage changed to IIA
    12/17/12 - 3/17/13 -- EPx4 @ MSKCC
    Clear: 3/7/13, 3/28/13, 5/2/13, more to come...

  8. #8
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    That's why this forum is so great. Thank you for correcting me. I definitely don't want to put false info out there
    _____________________
    Debrah,

    Husband (Cory) age 31..
    2/22/12-Consultation for a vasectomy. Turned away and told to get blood work and ultrasound. Cancer suspected.
    2/24/12- Dx, B-hcg=9670, LDH=250
    2/28/12- L I/O Embryonal, Chorio, teratoma-8.5cm retroperitoneal mass-2.5cm mass in neck lymph node
    3/12/12- 4XBEP-Start of Round 1( HCG-8100)
    4/2/12 Start of Round 2 (HCG down to 176)
    4/23/12 Start of Round 3 (HCG down to 13)
    5/14/12 Start of Round 4 (HCG down to 6)

  9. #9
    I don't want to assault the integrity of other fine hospitals, but MSKCC knows better than anyone. do what they say lol

  10. #10
    Had a meeting w/Dr. Bosl last week... tumor markers aren't quite normalized yet, so we're going to wait and see... but this seems it could simply be a p1 Seminoma and I may luck out w/surveillance for the time being.

    It's incredible to go from one extreme (pure choriocarcinoma) to another in a week -- and my heart goes out to all of you with more difficult diagnoses.

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