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  • Joining the club

    Hi everyone,

    First I want to say thank you to everyone who posts on here and shares their stories, experiences and advice. I'm not sure how active this forum still is, but I thought I'd share my story either way and put a few questions out there. I had my RT removed in 2014 (Stage 1 Seminoma) and frequently came here as a resource (though I never posted). For my initial TC diagnosis, I went in for a pain in my left testicle. They found tumors on my RT and gave me antibiotics to treat what they believed was epididymitis in the LT. The LT pain never went away, and they eventually changed diagnosis to a varicocele, for which I had a radiological embolization done. This didn't correct the pain either, at which point I lost my insurance learned to live with it, being reassured multiple times that it wasn't cancer. Fast forward to a couple of weeks ago, while in the ER for unrelated pain, I was eventually diagnosed with two tumors on my LT. The ER doctor ordered an ultrasound after I mentioned my ongoing testicular pain, and sure enough there were new tumors. Naturally this was quite the shock, as I'd had multiple ultrasounds done prior. I discussed it with my urologist, and we ultimately agreed to go for a partial orchiectomy to save hormone function if possible. The tumors were small and my previous cancer had no signs of spreading. The partial was a success, however pathology later showed that the remaining tissues in the testicle already had cancerous cells (stage 1 Seminoma). I knew the risks of the partial going into it, and two surgeries and radiation is the risk I took (may be treated as stage 2a now). Friday I go in for surgical follow-up and will discuss the next surgery.

    The whole thing is still a shock to me and I'm having all the (presumably normal) concerns about quality of life after losing my last one, especially being single. Not looking forward to many difficult explanations. But I'm somewhat relieved to read that most people on here still have a normal sex life. TRT is incredibly daunting, but I'm going to push for it to be ready come surgery time. Does anyone have recommendations about the best way to start? Is one way better than the others to get a steady baseline? I'm also interested in hearing about anyone's experiences with the implants, as I enjoy frequent travel and would love the freedom to not worry about it for months at a time...but no point if I'm not feeling well during that time.

    My urologist also mentioned removing the testicle through an incision on the scrotum this time, as my I/O wound is in the middle of healing. Has anyone had a procedure like this? I've read in previous posts that there is typically some concern about proper healing.

    I'm also considering going for two prosthetics (the hard, saline-filled ones, as I'm in the US), because I'm worried insurance may only cover them if I get them during the operation. I think it will help to not have the visual reminder of this experience everyday. Does a prosthetic slow healing/recovery in any way? Anyone out there regret getting/not getting them?

    Sorry, I know it's a lot of questions. Whether there's answers or not, I thought it would be good to introduce myself and get involved here. It's a (reluctant) pleasure to join the club, and to know there are others out there who have survived the journey.

  • #2
    Hi Rx,
    Others will chip in with their experiences (it's that kind of board), but I'll start with mine. Firstly I am a 2xTCer and have been on TRT since the day I "lost" my second. I am on topical gel application, once a day (typically) after my morning shower. And I can honestly say I feel no different now to what I did when I had both testicles. From my experience sex is really no different to what it was when I was "whole". Actually that's not strictly true, as the/any "ball play" is obviously different - but still very/highly enjoyable (if you like that knod of thing).

    Does TRT get in the way of "life"? Well not really. I worried about transference to my kids/wife but, the risks are minimal - and overplayed by the adverts. If you are sensible then there really is no issue. As a side point, my 14-year-old daughter had her hormones tested a while back (for something else) and given that she'd had 6.5 years in my presense with TRT, her readings are "normal".

    The biggest issue for me, is the need to "plan in advance" - when I travel, I make sure I have enough TRT to last the trip (and beyond). Also I have little "stock piles" at various locations (work, in my car, at my folks house) - basically just in case there is any emergency that would necessitate me not being at home for some reason. But that's it - it is just part of my daily life, and being honest - it's no hardship!

    Others will have other experiences, using long term injections. But for me (at the moment) the gels work very well, and because they are regular dosage - my hormone levels don't really fluctuate and I have *never* suffered any TRT-related mood swings/hot flashes/etc...

    I am not aware of anyone using implants, gels and injections seem the norm.

    Lastly, in terms of prosthetics. I've got two - had each inserted at the time of my operation(s). And, personally, I love them. I like the weight. I like the feeling that there is something "down there". I am not body conscious, but I do swim a lot, and have to do the "naked thing" in changing rooms, so again I appreciate the look of normality there. Also, my missus really likes them - she calls them "David" (as in Michelangelo's David - which is a pretty accurate description). I don't think you should underestimate the phychological value in having a pair, but ultimately it's a personal choice.

    Hope this helps.
    DZ

    Jan 2009: RHS (Seminoma) & RT
    Mar 2010: LHS (Embryonal Carcinoma)
    Sep 2010: Relapse & 3 x BEP
    Mar 2015: Five years "nut free"
    http://doublezeroami.blogspot.com

    Comment


    • #3
      Mate - Number one - Seek and get onto Testosterone replacement ASAP, don't let the docs brush you off. From my experience i had been running low on T I believe from the comprised Testicle I had. I know now this was the case but took the Low Stamina, reduced libido, slower facial hair growth and a bit if tiredness as a bit of aging. But when we got the T sorted out you remember what normal is!

      Prosthetic - yip I had an upgrade with IO number 2 all done at once. Silicon based. The doc will discuss size with you and they will run with something like your existing guy. I luv em but While there are not a lot of people that see its the mental thing that was good for me.

      Going through the scrotum - ummm have seen it here a couple of times but its not preferred as the scrotum of the are means it can be hard to repair and they not only take the testicle but the connections way up into the Abdomen. Discuss if with the doc - risks and pros and cons of each way. Partials are not common but a few guys have been here where that has occurred.

      Hey with good and well managed T replacement all will be in working order.

      Cheers

      >>>>>>>>>
      TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
      TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

      Comment


      • #4
        Thanks guys, I appreciate the input and the prompt responses! Even with the reassurance it's a difficult change. But it's good to know that at least most of my life won't have to change too drastically. I think I'll go for the prosthetics. I do wish the US had the silicon options that the rest of the western world allows, it sounds like they may feel a little closer to normal. I'll definitely make sure I've TRT ready post surgery...I think I'll already have to push for the prosthetics too as my doctor seems slightly adverse to them. But it's my body, so I'm sure he won't protest too severely. Have either of you experienced any side effects from TRT?

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        • #5
          Fairly sure the vid I watch the the other day on this http://www.tc-cancer.com/forum/forum...a-health-video the UCLA doc said there were Silicon and Saline available - did not think you had access to the Silicon though - although mine are fairly firm.
          >>>>>>>>>
          TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
          TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

          Comment


          • #6
            After getting on TRT I have never felt this good in years. It's a pain in the rear to shove a needle in my leg once a week. But the benefits outweigh the negatives. Sex life has never been better either.

            Comment


            • #7
              My thoughts on:

              Partial I/O: Never allow a doc to do this. My doc wanted to attempt it & I said no. losing a testicle (or two) is easier to deal with than TC spreading throughout you body.

              Orchiectomy via scrotum: Why? Re-opening the existing scar is a better option, & will heal the same as the original did. Why create a new scar? My RPLND scar has been re-opened 3 times.

              Implant:Get one if you want. I didn't. You will have a period of adjustment either way, but after a bit both options will feel "normal" to you

              TRT: Most methods work fine, some guys do better on one over another. I was happy with the gels, but forced to injections by a change in insurance. I liked the results better on gels, but the convenience of no daily applications is kinda nice, plus no worries about swimming/showering too soon after application. I was never worried about transference, it just doesn't happen in the real world as near as I can tell..
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

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