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I'm new here, here's my status...

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  • I'm new here, here's my status...

    I'm new to this forum - I have TC. There's so much going on, I'll try to keep this short, but I'm sure it'll end up being long. Here's my journey so far.

    Nov. 21, 2018: My 23 month old son wants to climb me and pushes hard on my lefty nicknamed Patrick (dunno why I just made this name up now). That ends up putting me in a coma of pain - thought I'd sleep it off. For some reason I thought something was wrong, the pain was too intense - took a tylenol - still, couldn't sleep overnight due to pain.

    Nov. 22, 2018: Decided to go to walk-in clinic. Doctor seems a bit panicky saying "get this ultrasound done as soon as you can". I try to get it done the same day, but the referred radiology clinic was fully booked - they snuck me in late Nov. 26, 2018. Out of curiousity, I also palpate and I feel a mass behind Patrick - the mass is harder than concrete - I doubt a bullet could penetrate it - I start panicking and I remember the words of the walk-in doctor: "I feel a small mass". Small mass? I feel something a lot larger/bigger!

    Nov. 26, 2018: Got the ultrasound done around 4:45pm (last appointment of the day).

    Nov. 27, 2018: Around 10am I get a frantic call from the doctor saying to come in immediately - 5.2cm tumour confirmed - go to urologist fast - I get an appointment the same day with a very positive specialist doctor (urologist) - I liked him. Orders some tests (liver, kidney, tumour markers), and books a pre-op for orchiectomy, as well as sign forms for an orchiechtomy. Urologist reassures me it's nothing and not a big deal, may even be benign - worse case scenario stage I cancer. Hold on a second, 5.2 cm? And the walk-in doctor said "a small mass"??? I felt like going back in and knocking that doctor out. 5.2cm is larger than the average testicle!!!
    The tumour marker test results are as follows:
    AFP: 5 (normal)
    b-HCG: 3 (elevated)
    LDH: 238 (elevated)

    Dec. 4, 2018: Pre-OP, all goes well.

    Dec. 5, 2018: The initial pain my son caused can no longer be felt. Yes, it took exactly 2 weeks for the pain to be gone!

    Dec. 12, 2018: Orchiectomy, all goes well.

    Dec. 20, 2018: Pathology reports 98% Embryonal Carcinoma, 2% Yolk Sac Carcinoma, contained to testis

    Dec. 21, 2018: CT scan with contrast, all clear except for a 4mm lung nodule.

    Jan. 10, 2019: Seeing same urologist, reassures me it's nothing, not a big deal, just stage I cancer - refers me to oncologist.

    Jan. 11, 2019: Oncologist office calls early morning saying they got referral and asked me to come in within the hour or else I'd have to wait 2 weeks until next free spot. I go to oncologist, and I'm reassured it's stage I cancer, that there's an 80% chance I'm cancer free. I don't buy it for a second due to the cancer being EC. I get some blood work done anyway.
    The tumour marker test results are as follows:
    AFP: 11 (elevated - increased)
    b-HCG: 3 (elevated - same)
    LDH: 367 (elevated - increased) - to me this is Stage IIIB cancer, I'm not sure why Stage I diagnosis???

    Jan. 14, 2019: I get a call from oncology booking me in for a CT scan because they are concerned my AFP has increased.

    Jan. 15, 2019: CT scan with contrast, anaphylactic reaction, almost dead. Results indicate same 4mm lung nodule (unlikely to be cancer), but a paraortic lymph node that grew from 7mm to 19mm.

    Jan. 22, 2019: Pathology is reviewed to 95% Embryonal Carcinoma, 5% Seminoma - a bit confused as to the mix up of YSC vs. Seminoma???

    Jan. 25, 2019: Confirmed from oncology that cancer has metastasized, re-staged IIA. Again, I don't buy it. It's been almost 2 weeks, there's no way that lymph node has remained at 19mm. I'm certain it has at least grown by at least 1mm in 10 days, making it go past 20mm indicating my staging is IIB at least. Given how quickly EC grows, I wouldn't be surprised if it's past 50mm or even 60mm. Remember that it went from 7mm to 19mm in just 3.5 weeks, and cancer grows exponentially rather than linearly. I felt devastated, knowing my son could grow up without me. Also had blood work done for tumour marker checks:
    AFP: 15 (elevated - increased)
    b-HCG: 9 (elevated - increased)
    LDH: 288 (elevated - decreased) - need an explanation here because the previous 367 would put me at stage IIIB. Why am I not IIIB? Don't get me wrong, I'd rather be stage 0, but I think I require an accurate diagnosis for best treatment possible.
    Doctors are currently waiting for a Feb. 8 appointment to do more serum markers checks to see if they are sky rocketing or not - based on that, they are planning to either do RPLND or Chemo.

    Feb. 8, 2019: Pending appointment...

    Personally I'm rooting for RPLND, I'd be really pissed if they make me do chemo then come back to me and tell me "Yeah hey listen let's do RPLND now because you still got some in your lymph nodes". It's riskier to do RPLND post-chemo rather than primary. Wouldn't you guys agree? Maybe RPLND alone could "cure" me.

    Thanks for reading.

    P.S.: Some of you may ask "why do you think those values are elevated?" - well to answer that, I'm using the lab's reference ranges. Although, I think it is more important to know the trend rather than the actual values, which in my case, the trend is increasing.

    Edit #1: I update the introduction to make things a little shorter and added some text formatting.
    Last edited by FerrinMass; 01-28-19, 12:01 AM.