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Thread: Welcome to the club

  1. #1

    Welcome to the club

    Hello all. Regretfully, a new member to the forum and TC club here. My story so far:

    7/1/12 Noticed one was bigger and firmer than the other
    7/17/12 Urologist exam and Ultrasound confirm fears
    7/18/12 Pre-I/O Markers AFP-551, hCG-1088, clear CT
    7/19/12 Right I/O

    Currently awaiting pathology and post I/O marker results. I at least know based on the markers I am looking at nonseminoma. I definitely hate the waiting.

    I know the decisions on further treatment will hinge on pathology and marker changes, but in the meantime, some questions:

    The clear CT certainly is encouraging, but the high markers are not.

    Do the high marker values themselves indicate anything about what stage my tumor might be? Or could you have markers that high in stage I?

    Anyone had markers that high that went back to normal post I/O and just went to surveillance (no chemo)?

    Is it possible (based on what pathology might show) that chemo might be recommended even if my markers do go back to normal?

    Am I correct to assume that with a clear CT, RPLND would not be likely?

    Really just trying to prepare myself for what the possible courses of action might be at this point (and determine what my chances of avoiding chemo might be). Certainly hoping for the possibility that I am cured already.

    29 and already tackled one cancer (melanoma), ready to put another in my rearview.

  2. #2
    Join Date
    May 2011
    Location
    Italy
    Posts
    575
    Do the high marker values themselves indicate anything about what stage my tumor might be? Or could you have markers that high in stage I?
    If the markers will remain out of range even weeks after the I/0, you are staged 1S.
    To be stage 2 or 3 metastatis need to show up on CT scans, then it's not your case.

    Is it possible (based on what pathology might show) that chemo might be recommended even if my markers do go back to normal?
    Recommended ? yes, IE if you have a big % of embryonal carcinoma (fast spreading cancer) and maybe the lympho vascular invasion, etc.
    Mandatory ? Nope.

    Am I correct to assume that with a clear CT, RPLND would not be likely?
    Same for chemo: maybe recommended if IE you have a big % of teratoma (slow but chemo resisted kind of cancer) etc, but not mandatory.

    29 and already tackled one cancer (melanoma), ready to put another in my rearview.
    I'm really sorry you're fighting again against this horrid beast, but because of the stellar cure rate of stage 1 TC, be sure you'll win also this battle.
    - early Apr/11: something is "wrong" in my righty
    - 16/Apr/11: ultrasound find a mass in it
    - 27/Apr/11: right I/O
    - 29/Apr/11: stadiation CT scan shows "all clear"
    - May/11: pathology: 1 cm Seminoma (90% necrotic), no RT/LV invasion
    - Surveillance....
    - March/13: relapse - para aortic node 1.7 cm, waiting for treatment...

  3. #3
    Join Date
    Mar 2010
    Location
    Northern California
    Posts
    1,395
    Sorry you had to find us, but welcome to the forum anyway.

    High markers do not really indicate the stage. How fast they drop post op gives some indication, failure to drop much at all generally means there is still cancer that has spread beyond the testicle.

    Some guys do drop to normal with high markers. There is a specified half life that they look for, have they drawn more blood yet?

    Both Chemo & RPLND are still a possibility, but impossible to guess at this point. It will depend greatly on the path report, how fast your markers drop & even which doc you are seeing.

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

  4. #4
    Had followup appointment with the urologist today and got pathology results:

    40% Embryonal Carcinoma
    40% Yolk Sac Tumor
    10% Choriocarcinoma
    10% Immature Teratoma

    Confined to testis (no LVI), stage 1.

    Still waiting on followup blood marker results, but based on the high percentage EC, the urologist said I am looking at either RPLND or 2-3 rounds of chemo. Does that sound right?

    I have an oncologist appointment and hospital tumor board upcoming now, but the urologist said it there is not a strong preference for surgery vs. chemo in my case, and it will likely be my decision which route to take.

    What would make you choose RPLND vs. chemo? I believe he said if my markers remain elevated, then the preference would be chemo. Any other deciding factors? Does one have a much lower recurrence rate than the other?

    A somewhat unique aspect in my case is that I have previously had melanoma as well. The melanoma was removed and didn't show signs of having spread. They are two very different types of cancer, so there is not reason to believe the two are related, but I wonder if the chemo would have some beneficial affect on the melanoma if there are any remaining traces of that in my body.

    Based on what I know so far I lean toward chemo, since that seems like it would get the cancer wherever it might be hiding, whereas the RPLND is only targeting one (albeit most likely) place it may have spread. Kind of overwhelmed by the decision at this point. Hoping the oncologist and maybe you guys can provide more info so I can fairly weigh my options.

  5. #5
    Join Date
    Mar 2010
    Location
    Northern California
    Posts
    1,395
    Sounds like stage 1A (if markers come down) to me, the NCCN guidelines call for surveillance or RPLND

    Stage 1Bb(if markers come down) calls for RPLND or 1xBEP,2xBEP or surveillance.

    Stage 1S Markers do not drop) Calls for 3x BEP or 4xEP With potential additional treatment depending on response.

    Your oncologist should be more up to speed on this than your uro, I'd guess, but good to know the NCCN recommendations before you see him.

    Personally, if it does come down to RPLND or chemo, I'd go with chemo. The CT is clear, so to me, surgery does not make sense. (& I had complications from my RPLND that do not seem to be common these days)

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

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