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Had Orchie last week, seeing Oncologist next week!

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  • Had Orchie last week, seeing Oncologist next week!

    Hi All! I've been prowling around this forum for some time and have found it to be an incredible source of information and guidance. I'm ready to share my story, and would love your thoughts and feedback.

    I had my orchie last week, and am meeting with two oncologists (Sloan Kettering & Weill-Cornell) next week for opinions on treatment next steps. Here are my "stats" so far:

    3/30: CT & Xray show no signs of spreading
    3/30: Tumor Markers all within normal range except for LDH at 263
    4/18: Right I/O (got a prosthetic!)
    4/23: Stage IB/pT2, 100% seminoma, 4.5cm, LVI present
    Tumor invades rete testis + hilar soft tissue
    (40yo, and feel like I'm on the old end of the spectrum for this.)

    I believe the most relevant risk factors for relapse are the presence of LVI, RTI, and 4.5cm tumor size.

    I'm guessing adjuvant chemo: single dose of carboplatin -or- EP x 1 (have asthma; ruling out BEP) or active surveillance?

    I don't like the idea of a wait & see approach on surveillance. I want to be empowered and take action on this, so surveillance sounds terrifying.

    What are your thoughts on my situation? Really need a sounding board, as I'm in the weird in-between period of having the orchie, but not yet meeting with the oncologist just yet. Thank you all!
    Last edited by JohnNYC; 04-30-18, 10:20 AM.

  • #2
    John,

    Too bad you had to join up on a site like this. However; rest assured that you could not have found a forum with better people than this one. We are all one big family and the there's a wealth of information and support here.

    I'd say that your current situation is all around good. You already seem well informed of what you are dealing with and you are being proactive about your care. Markers, CT, etc all seem to be good and point towards a true Stage 1 disease.

    At this point ALL of the options that you will be presented with are valid and lead to a very high cure rate. I'd say go with what * you * are most comfortable with and works best with your situation in life.

    Welcome to the Seminoma club with me. Oh, and I was 39 when I got mine....so I understand how it feels to be "old" for this disease.

    - Matt


    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
    March 13th: Left IO 100% Classic Seminoma
    6.3 x 5.1 x 3.8 cm, no invasion of anything
    LDH never fully normalized
    Stage: IS
    Watchful Waiting
    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
    May 12th: started 3xBEP
    Neupogen during Cycle 2 and 3
    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
    August 4th: Post Chemo CT/PET scan
    September 4th: Port removed
    July 10th 2018: 4 YEARS ALL CLEAR !

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    • #3
      Welcome to the club John. I think the hardest part of this experience is the waiting. Waiting for surgery, waiting for results, waiting for the next step to take. I guess you'll have to wait and see what the experts recommend and then decide from there what to do. Whatever you decide to do you will still be on surveillance for a period of time. That's just the nature of the beast.

      As someone who was at stage 2b I had a somewhat easier path than some in that the next course of action was laid out for me. I did have the choice to say no thanks at any point but with such a high success rate it didn't make sense to do that.

      I was diagnosed at 63 with 100% embryonal so I'm definitely an outlier with this cancer. I had 4 rounds EP and an RPLND with a few complications and as crazy as it sounds I'm grateful I got it at my age and not at 20 because I probably would have died from it back then. Big thanks to Dr. Einhorn and his cisplatin trial for the success so many of us have today.

      It's a heck of a roller coaster ride but you'll get through it ok. Eric.

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      • #4
        With the info you gave, servaelience sounds like the optimal choice. Having been through 3 rounds of chemo I wouldn't wish it on my worst enemy. Having a clear ct with no signs of spermatic invasion and being seminoma, you are likely cured. Chemo may cure you but can also cause other cancers, and I would avoid at all cost to unless necessary.

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        • #5
          I would normally also lean towards surveillance, but if you feel you will worry too much a round of carboplatin may be offered. believe it's the normal go-to for stage 1 seminoma.

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

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