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Not diagnosed but will be soon, very worried

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  • #16
    It's best to wait for CT scans before making any decisions!! I know it's hard, but you'll find out soon
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 2.5 years now + new baby!

    Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
    My Testicular Cancer Support Kit
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    • #17
      FYI, adjuvant radiation IS on the NCCN guidelines for seminoma stage 1a and 1b, at least in the 2018 version. However, surveillance is vastly preferred in that case.

      But all this is conjecture. We need a clear picture of your post orchiectomy tumor markers and your CT scan results to determine actual staging.

      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
      7/7/15: bHCG 56, AFP 42, LDH 322
      7/13/15: begin 4xEP, end 9/18/15
      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
      4/20/16: RPLND @ IU - teratoma only!
      10/22/19: all clears up to this date!

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      • #18
        Thank you for all the replies. You are right about radiation for stage 1 seminoma.
        But like you said I dont know where im at yet. I wont have a CT scan for a while. I requested to be treated at University of New Mexico cancer center here in Albuquerque and now I have to wait until my referal goes through from my urologist. She said that since they (UNM center)are a closed system she wont be able to be my urologist anymore and that I will get another urologist from them. Shes a great doctor and she runs a small urology office.
        So i dont know how long it will take before I am able to have a CT scan and be seen by another doctor.
        I hope this process doesn't take too long.
        Should I have another pathology report done for a second opinion? I read an article saying that LVI in seminomas gets reported on wrong sometimes due to "artifacts"? The LVI is worrisome. Another article said that LVI for seminomas are not as important factor as tumor size >4 and rete invasion. I should probably just wait until the after CT scans.
        Why are seminomas considered less bad than other cancers?
        How responsive is seminoma to chemo?
        What are the long term effects of radiation?
        How high are the secondary cancer rates from radiation?
        Why is radiation a better choice for seminomas in earlier stages?
        How likely is for seminomas to skip over retroperitoneal and move to other areas like lungs?

        Sorry for all the questions and the long rant but I cant help it.
        edit: one more question about LVI, is this used as a indicative for spreading?
        Last edited by db79; 09-18-19, 10:53 AM.

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        • #19
          Man, just try to relax, you'll be fine, you still have over 99% chance to live up to 120 years. There's no point in rushing before CT scan, so try to focus on it, do whatever you can to do it as fast as you can.

          My opinion (just mine) is that you don't need another pathology report, this one looks very professional, let's start from it.

          Tumor type, LVI, rete testis invasion etc. are prognostic factors, but this is just statistics, each patient has his own story. I've been reading a lot about it, seminomas are just as bad as non-seminomas, but somehow it seems that they grow little bit slower, my opinion is that's just because seminoma's patients are statistically older than non-seminoma patients, and have a little bit slower metabolism. Also, their spreading path is more predictable, but I think it is just because seminoma is specific histological type of TC, and non-seminoma is a common name for a various histological TC -types in various mixtures and ratios of specific TC types. I think it's the same for chemo responsivity. I think I red that retroperitoneal area is first landing area in 86% of cases of seminoma spreading, but as I said, it's just a statistics.

          Reports I red found that LVI for seminomas is not significant factor. Rete invasion is, but it's hard to say how many patients in cohort had T2 + rete invasion, like only 10% of patients with T1/T2 relapsed in 5 years period compared with T3/T4 patients of which 30% relapsed, and also only 10% of patients without rete invasion relapsed, compared with 25% of patients with rete invasion. So, it's hard to conclude did some patients relapse because rete invasion or higher T staging, it's reasonablly to conclude that more guys with T3/T4 had also rete invasion.
          45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
          Waiting...

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          • #20
            https://cebp.aacrjournals.org/content/25/5/773

            After reading medical journals like this one I am considering ta ask for RPLND surgery if I still qualify for it after my CT scans are done. From what I read stage 1 - 2b seminonas can be treated successfuly with RPLND. I really want to avoid radiation and chemo and CT exposure. It seems that seminomas have a better 5 year prognosis, however 15+ years down the line seminoma patients are worse than the non seminoma which is mostly due to higher exposure to radiation, and more CT scans due to no tumor markers.
            I dont know if I still qualify for it due to my age 40. But I did great with my I/O surgery as I'm in general good health and I usually try go to gym on regular basis.

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