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  • #61
    Hi all,

    I just wanted to give a quick update. So far things have been going well, mostly working on physical and cognitive recovery.

    However, I just had my six month check up and things were not ideal. Uncertain is probably the best word. The found a very, very tiny new nodule in my brain, which is new since my last scan in January. This alone is not enough for too much concern (though, as my rad-onc said, a brain nodule is not the same as a lung nodule, they are a bit more concerning especially given my case history), but it was coupled with an equally tiny uptick in bHCG. I am talk tiny here. My lab's standard range is <0.1, and my result was 0.2. I know, it seems like nothing, but the uptick and something visible on the MRI has everyone concerned.

    I have no idea how to gauge the severity of this situation. And as I am constantly told, there is really no textbook to explore for my case. So it involves a lot of guesswork. The good news is that if this is a recurrence, it is tiny and we caught it early. Obviously, it is incredibly discouraging if it is a recurrence because I did whole brain radiation and this is in a new spot on the brain. Not that he doesn't always take it seriously, but I think my oncologist and his team are on high alert with this. He outlined treatment options we would explore once we get more information. I won't go into those now.

    On Tuesday next week, I am going to have a lumbar puncture. They are looking to see if they get some sort of positive result. Mostly, they are looking for bHCH in the spinal fluid. But they are also looking for cancer cells. Finding cancer cells would be bad, because it would mean that my leptomeningeal disease is back. But I don't think that is likely given the rest of the MRI and PET reports.

    I don't know what to think, or feel, at this point. Just somewhat in shock and spinning between "it can't be cancer, there is no way" to "of course its cancer."

    ​I will keep you posted. Hope for a false positive.
    9/27/2011 - Mass detected
    10/4/2011 - Left I/O; Seminoma; Stage I
    11-12/8/2011 - Radiation therapy
    2012 - 2013 - Surveillance
    2/6/2014 - bHCG 7.3, then 9.2
    2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
    2/17/2014 - 3xBEP
    5/12/2014 - Tumor completely resolved
    9/12/2014 - New nodule on CT scan
    11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
    12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
    1/16/2015 - Tumor completely resolve!
    3-6/2016 - started having severe and worsening headaches
    6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
    8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

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    • #62
      CONOR~ Gosh!!! Ugh!!! Please keep us updated after lumbar puncture. Praying hard for you!!!!
      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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      • #63
        Thanks for update Conor, I really hope it's a false alert. You have gone such a rough journey already.
        08-12/2015 Back pain, several epididymitis, fever, night sweats, went to many doctors but nobody thought I had cancer as I had nothing in testicles
        01/2016 Retroperitoneal seminoma stage III, 28cm (tall) mass in retroperitoneum, big masses also in neck
        02-04/2016 3*BEP
        09/2016 Fever again -> relapse, cancer now in lungs too
        09/2016 2*TIP
        10/2016 1*HDC with stem cell transplant -> almost died to severe side effects, one week in ICU, 2nd round skipped
        02/2017 RPLND (21 hours!) - one week in ICU again, found necrosis/fibrosis only
        06/2017 All clear!

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        • #64
          My heart is aching for you. It sounds like you've been through quite a lot already. Cliche, but try not to worry before you have to and take one thing at a time. We are crossing our fingers for a false positive result here as well.....here's to false positives for you too!

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          • #65
            Hello Connor, just a quick note to say I am thinking about you and hoping like hell that you are improving and continuing on surveillance.
            best,
            Ross

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            • #66
              hello Connor,

              i have been following your battle. Seeing that there are no updates make me worry, i hope you are fine.

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