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  • 30 Years

    Just realized its been 30 years since first TC and I had to go on TRT. 30 Years..... It took me a long time to work through it - we did not have the internet and support/resource groups back then that we do now just for TC. I messed up my hormone replacement for so long ended up with physical/medical side affects. Suffered with infertility and relationship issues. Sigh.

    I am glad to see the younger guys have so much information and connection these days - as I did when my second TC came for me 5 years ago.

    The loss bothers me from time to time, but I am so much better now on all counts.
    "More human than human is our motto...."

  • #2
    Good to hear! Glad you're doing well.
    24 year old diagnosed 6/11/16
    Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
    Pre/o CT Clear
    Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
    Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
    Post-op CT with one enlarged lymph node - 1.5x1cm
    Borderline stage 2B/3B
    BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
    CT and markers clear - in remission - 28/2/16

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    • #3
      Congrats on surviving twice! Did you require chemo for either or both times you had TC?

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      • #4
        Wow! 2x survivor of TC.
        Son Grant
        dx 12/21/16 at age 17

        BEP x3
        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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        • #5
          Originally posted by BenG1980 View Post
          Congrats on surviving twice! Did you require chemo for either or both times you had TC?
          The first time I had radiation therapy only. The second time - surgery and observation only.
          "More human than human is our motto...."

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          • #6
            Originally posted by Nish115 View Post
            Good to hear! Glad you're doing well.
            Thanks - better late then never. I can say I am doing well enough now its also easier once you get older. I fixed alot of emotional and physical issues through both both therapy and medical treatment in the last 5-10 years. The internet can bring so much help and advice these days.
            Last edited by roybatty; 04-30-17, 06:24 PM.
            "More human than human is our motto...."

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            • #7
              Congrats,I wish you best in future.
              Right I/O, teratoma Left I/O,seminoma

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              • #8
                @roybatty, I'm curious about your experience. This year marks 36 years since I was treated for TC with an orchiectomy, RPLND and chemo. I've had several mild symptoms most of my life (which I attribute to the treatment but don't know for sure it is the cause). My symptoms started to become more pronounced in the last 7ish years - dull low-back pain, fatigue, physically irritated and can't get comfortable when laying down. The doctors can't seem to find anything obviously out of place other than some small liver cysts.

                Have you experienced anything similar or other symptoms as you've gotten older?

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                • #9
                  Originally posted by archon View Post
                  Have you experienced anything similar or other symptoms as you've gotten older?
                  Archon, Low back pain is probably the most common form of pain of human beings world wide. It is very rarely related to TC, fatigue at your age is a bit unusual, might want to get your testosterone level checked. What exactly stops you from being comfortable when laying down? I have no idea what you mean by "physically irritated" ?

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

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                  • #10
                    Originally posted by Davepet View Post

                    Archon, Low back pain is probably the most common form of pain of human beings world wide. It is very rarely related to TC, fatigue at your age is a bit unusual, might want to get your testosterone level checked. What exactly stops you from being comfortable when laying down? I have no idea what you mean by "physically irritated" ?
                    Thanks for the reply. To be clear, I'm actually 40 this year. And the doctors all say the same thing about back pain, but my experience and intuition says it's something more than your normal aging back pain.

                    My testosterone was within normal levels when I tested about a year ago. I suppose it wouldn't hurt to check it again but these symptoms have been there for many years at this point. It seems like this kicks up about once a month or so and lasts up to a week.

                    The irritation is hard to describe. It's like a nerve thing. I just can't lay in any one position for more than about 10 minutes. Whichever limb I'm lying on just feels agitated. If it progresses (because I didn't roll over or get up all night) it can actually turn into neck pain, itching in my ears and headaches. I think something digestion-related triggers all of this (which would partially explain the fatigue as well). When I fast for more than 24 hours, it all goes away.

                    Things that have not revealed any obvious problems - multiple full blood chemistry panels, recurrent GI distress panel (including gluten and dairy testing), multiple back x-rays, a chest CT, an abdomen CT, and a colonoscopy. An upper EDG resulted in a diagnosis of Gastroparesis but I'm confident that is triggered by something else.

                    I have wondered about the possibility of a very minor lymph leakage. I've also wondered about the possibility that my staples from the RPLND are just breaking down and causing irritation somehow. If either of those are the cause, they were not detectable via the above mentioned tests.

                    I'm at a loss as to what else to explore at this point. So are all the doctors I've been to. It may not be related to my TC treatments at all, but I wanted to at least explore that possibility since nothing else has enlighten us.

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                    • #11
                      Well, your experience with back pain as a younger man does not help much as you get older, believe me. 4 or 5 years ago I would hike 3-5 miles on a whim several times a week. Then without a lot of notice, pain would radiate from my hip to my ankle & I had to stop. Turns out my lower 5 disks were bulging out & pressing on my sciatic nerve. Certainly nothing to do with TC or it's treatment, just my genes & lifestyle. Your complaints do not sound related to TC or it's treatment to me. Lot's of unrelated things happen to us as time goes buy, trying to tie it all to TC will just drive you crazy with worry. Concentrate on finding solutions to your difficulties,but forget about a TC tie-in, you are very unlikely to find one.
                      Jan, 1975: Right I/O, followed by RPLND
                      Dec, 2009: Left I/O, followed by 3xBEP

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