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Losing my second one this week... Prosthetic fears...

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  • Losing my second one this week... Prosthetic fears...

    Where to start... Two years ago I was diagnosed with a 'dead' testicle on the left side. An orchiectomy was performed, removing the testicle and then put on TRT. Then, on with life I went.

    Fast forward to a week ago. I found myself in the emergency room with considerable pain acute to the right testicle. After a doppler and CT, the right testicle was found dead too.*Both testicles were undescended as a kid.

    Aside from the fact that I'm 28 and bummed beyond belief, I am facing some real fears with the orchiectomy being performed this week to remove the right one now.

    Prosthetics... After the left one was removed, I opted for no prosthetic. This time around, I'm being told prosthetics are a considerable option. Yes? No?

    I'm majorly concerned about my quality of life following the surgery this week and am totally unsure where I stand on the prosthetic issue. All of you folks on this message board have been no less than inspiring and incredibly helpful these last two years for me. I truly appreciate any opinions or guidance you can give me.

  • #2
    Hi J,

    No longer having either of my two, I can empathise with you. That said, there is life after testicles - honest!

    The "secret" to this life, is getting your TRT right. I think it's good that you are already on TRT however you may need to boost the amount you receive - I am not an expert here, just a "dumb user". As you'll have read, getting the right amount (for you) is key to a good/normal quality of life. I'd suggest getting in touch with a (male friendly) endochronologist and get your levels measured again.

    In terms of prosthetics - that's a personal choice. I choose to have them and I wouldn't be parted from them... but it's a personal choice. If I couldn't have them then I think I'd be fine, but now they are there I can really see how they help me both physically and mentally. Yes I know they're not real, and yes I am quite happy to talk about them with other people (so they also know they're not real), but over the past couple of years they have become very much part of my body. And better than that - they won't let me down like my originals did!

    Good luck in your choice, and remember you can change your mind later and have them added/removed as you see fit.

    Feb 2009: RHS (Seminoma) & RT
    Mar 2010: LHS (Embryonal Carcinoma)
    Sep 2010: Relapse & 3 x BEP
    Mar 2014: Four years a eunuch!
    http://doublezeroami.blogspot.com

    Comment


    • #3
      Have you had a second urological opinion?
      Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
      Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

      Please see a physician for medical advice!

      My 2013 LiveSTRONG Site
      The 2013 Already Balders

      Comment


      • #4
        It wasn't news I took lightly. The event started with a trip to the emergency room with what I thought was a ruptured testicle or testicular torsion. After tests found the testicle wasn't ruptured or torsioned, I set an appointment to see a urologist. The urologist gave me the news that the testicle was dead so I set up an appointment with a second urologist, and got the same diagnosis. At this point, I went to see my flight physician (I am an airline pilot). He referred me to a third urologist who also concurred with the diagnosis and is subsequently doing the operation.*

        My endocrinologist is continuing to handle my TRT, however I'm being told that the right testicle stops producing testosterone shortly after being put on TRT. If this is the case, I haven't really been producing testosterone on my own for the last two years, right?

        I really want the prosthetics. I am nervous right now about them but I think that's because I'm still in a lot of pain and fear it won't ever go away. I'm guessing that, like my first orchiectomy, I'll feel much better once it's done, but still worry about the prosthetics long term.

        Comment


        • #5
          Here is another one for you guys...

          Two years ago, before, during, and immediately following my orchiectomy, my urologist at the time (now retired) told me sperm banking was not a huge requirement since my right testicle was still in "good shape".

          I never banked...

          Results from the sperm analysis came back today... NO sperm, not a single one, was found in a sample from my now atrophied right testicle...

          I'm 28 years old now, sterile, and no chance of ever having my own child.

          It's been a bad day.

          Comment


          • #6
            Another 2x survivor's thoughts

            J-
            I registered here on the forum specifically to reply to some of your posts. First off, I'm very sorry that you are going through this a second time. It's one of those things where the odds are very much in your favor, until you wind up getting it again. Then the odds are meaningless.

            Anyway, I went through TC for the first time when I was 23: seminoma, contained to one testicle, caught early (from self-exam). Had the one removed and went through radiation, but no chemo, fortunately.

            Just last summer, I again felt a lump, this time on the remaining testicle. I was shocked when it turned out to be cancer again, at the age of just 30 (seminoma again, at least, which was good news). I had it removed and am now on testosterone replacement therapy (about to switch from 10 mg Androgel to the implant).

            I actually did bank sperm before the first cancer, just in case. But, unfortunately, I had them discard the sample when I was in my late 20s: it was expensive to continue storage, I seemed very healthy, the remaining testicle was fine, and I wasn't even sure if I would want kids.

            You can probably guess the next part: sperm analysis before the second surgery last summer showed no live sperm. It was probably the hardest part, emotionally, for me of the whole process, so I can imagine what you must be going through. In addition to all the advice you will hear about adoption, and surrogacy, and all those options (which are all good ones, I think), I have another piece of advice: Ask the doctors about saving a piece of the testicle from during surgery to see if they can find any motile sperm there. My doctors suggested it, and while it was a long shot (so I wouldn't get my hopes up too much), they were able to find several hundred thousand motile sperm from the tissue for storage. There is no guarantee they will survive the storage, and I would be looking at fairly expensive IVF down the line, but it is comforting to know that at least there is a chance if my partner and I decide to go that route.

            One other thing, about the prosthesis: I was in a similar situation to you, where I did not get a prosthesis the first time (I figured no one would notice, which they never have). This time, though, I decided to get a prosthesis, but just the one (though I could have gotten two). I did not like the thought of it feeling empty, and I was worried how it would look with nothing down there. I've been very happy with just the one, though I probably would feel fine with two, as well. I figured that I wanted it to be as similar to how it had been for the past 7-8 years, rather than trying to get it to be like it was before that. Since I am in the US, my only option was saline filled, but I have been very happy with it so far. There is a chance they can leak, but saline is inert and won't harm the body, and you can get it replaced if it ever does leak.

            I've seen some people here on the forums mention that their insurance was not willing to cover inserting the prosthesis later on, after the surgery, so I would suggest getting the prosthesis done during the surgery if you are planning on getting them.

            I'm happy to answer any questions you might have about any of this. Sorry for such a long first post, but I hope that this may help you some.

            Comment


            • #7
              Mate

              Prosthetic? a personal choice that you can consider. For me though with TC #1 I did want a Prosthetic but the uro put me off siting infection and I was not on the younger side. Any way zipping along 7 years it was on my mind to rasie this with the Uro on my next and what was going to be my last visit but then TC came along and I took the opportunity to get an upgrade with 2 Prosthetics at the same time, this was the same uro as seven years prior but in this time things had moved a long way and infection etc was a slim complication, also the mental benifits are now redily recognised. For me love em but you can be happy without as some of the guys here are.

              IMPORTANT = you need to get you testosterone repplacement sorted and don't delay this or let the docs delay you on this.


              Cheers

              Kiwi
              >>>>>>>>>
              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


              • #8
                I just wanted to add that my son elected to have a prosthesis put in and absolutely hated it at first. His urologist said he needed to keep it for two months and then see how he felt. Now he is happy he has it. Just takes getting used to, I guess.
                Wishing you all the best with whatever you decide.
                a mom

                Son, age 25
                2/28/12 Right I/O
                Stage 1 nonseminoma
                Embryonal carcinoma - 60%
                yolk sac tumor - 30%
                focal seminoma - 10%
                LVI
                CT scan clear
                AFP - 22
                4/9/12 BEP x 3

                Comment


                • #9
                  Hey folks,

                  My reply is long overdue. Surgery was this past week and I've been spending the remainder of the time since then resting and recovering.

                  Last Monday I had my second orchiectomy, this time on the right-hand side. Following, the doctor put in two saline-filled “Coloplast” prosthetics. I'm just over a week post-op today and I have to say I'm pretty happy with them.

                  They are harder than my real nuts, but I'm not concerned with that. I have noticed that as the swelling goes down, my left testicle is slightly higher than my right one. I can attribute this to a few different things, the first one being that the left has always sat a little higher than the right one. Secondly, for the last two years, that side of my scrotum has been empty. I'm sure there has been some shrinkage. Is there anything anyone else out there has done to bring theirs down a bit? The doctor reminded me to “pull” down on them daily to try to keep them in the scrotum. I've been doing that every chance I get, usually during urination, etc. I'm gravely concerned with breaking them or tearing sutures attaching the testicle itself. Anyone have any advice on any of this?

                  As for removing the bad testicle to do sperm-mapping on it. I considered it and discussed it at length with my family. While the option may have been viable, it wasn't one I was about to pursue for a few different reasons. First off, I was concerned with not finding any there either. Second, if we did manage to find any, what would we do if the sperm was found mutated, or not of high quality. Lastly, I have two amazing brothers who are healthy, smart, good looking, and have a much better attitude than I do (Ha! ) that have both expressed their more than willingness to participate as a donor when the time comes for me. This really put me at ease.

                  Lastly, the topic of testosterone replacement therapy. I have been on 100mg of Testosterone-Cypionate every 5 days by way of an IM injection for a little over a year now and the year prior to that, 5g of Androgel daily. I'm not entirely sure how much testosterone the right testicle had been putting out, but I can't imagine it was much. Anyway, just to be certain, I'm going to get blood work done Thursday to see what my results come back like. From there, my endocrinologist and I can decide whether we are still at a good level or if dosages have to increase.

                  In the mean time, I'm going to enjoy my new “boys” down below.

                  Justin

                  Comment


                  • #10
                    As far as one being lower than the other, that's the way most guys are naturally. I recall reading that it serves to prevent injury when you close your legs.

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

                    Comment


                    • #11
                      Originally posted by justaiks View Post
                      Hey folks,

                      My reply is long overdue. Surgery was this past week and I've been spending the remainder of the time since then resting and recovering.

                      Last Monday I had my second orchiectomy, this time on the right-hand side. Following, the doctor put in two saline-filled “Coloplast” prosthetics. I'm just over a week post-op today and I have to say I'm pretty happy with them.

                      They are harder than my real nuts, but I'm not concerned with that. I have noticed that as the swelling goes down, my left testicle is slightly higher than my right one. I can attribute this to a few different things, the first one being that the left has always sat a little higher than the right one. Secondly, for the last two years, that side of my scrotum has been empty. I'm sure there has been some shrinkage. Is there anything anyone else out there has done to bring theirs down a bit? The doctor reminded me to “pull” down on them daily to try to keep them in the scrotum. I've been doing that every chance I get, usually during urination, etc. I'm gravely concerned with breaking them or tearing sutures attaching the testicle itself. Anyone have any advice on any of this?

                      As for removing the bad testicle to do sperm-mapping on it. I considered it and discussed it at length with my family. While the option may have been viable, it wasn't one I was about to pursue for a few different reasons. First off, I was concerned with not finding any there either. Second, if we did manage to find any, what would we do if the sperm was found mutated, or not of high quality. Lastly, I have two amazing brothers who are healthy, smart, good looking, and have a much better attitude than I do (Ha! ) that have both expressed their more than willingness to participate as a donor when the time comes for me. This really put me at ease.

                      Lastly, the topic of testosterone replacement therapy. I have been on 100mg of Testosterone-Cypionate every 5 days by way of an IM injection for a little over a year now and the year prior to that, 5g of Androgel daily. I'm not entirely sure how much testosterone the right testicle had been putting out, but I can't imagine it was much. Anyway, just to be certain, I'm going to get blood work done Thursday to see what my results come back like. From there, my endocrinologist and I can decide whether we are still at a good level or if dosages have to increase.

                      In the mean time, I'm going to enjoy my new “boys” down below.

                      Justin
                      Justin,
                      I'm glad to hear that you are recovering from surgery. I'm also glad that you thought about sperm-mapping (I didn't know that was what it was called) and made an informed choice. As for the testicles hanging slightly differently, I don't have much knowledge, since I only got the one implant. But I do remember when I had the real things that one hung slightly lower, if that helps any.

                      It took me a little while to get used to the sensation (or lack thereof!) of the implant, too. After a few months, it was so normal that I couldn't even remember how the real one was different.

                      I had to pull my implant down for about 4-5 weeks, every day, just as you've said. I was a bit worried that I might have to do that every day forever, but it eventually settled in in its correct spot. I'm not sure if the muscle/skin have to heal up first, or if scar tissue has to seal it in, or what, but I don't have to pull it down at all any more. Here's hoping that's the same for you, and good luck with your recovery.

                      Comment


                      • #12
                        Haye Mate

                        Good to hear that things are moving along. The new boys might be "tight" to the body for a while, if this is the case its normal I took a couple of months for both to "relax".

                        Have funm hope the T is kicking in.

                        Cheers

                        Kiwi
                        >>>>>>>>>
                        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


                        • #13
                          great thread guys i just got my 3 year all clear and after much thought have decided to get a prosthetic put in. i am still a lil nervous but i am excited all at the same time will keep ya posted i have surgey on the 28th of this month

                          Comment


                          • #14
                            Best wishes on the surgery. It's less involved than an IO such that the time you spend in the recovery room is longer than the time you actually spend in the OR. Let us know how it goes.
                            TC1: 1996, right orchiectomy, seminoma stage I 3.5 cm mass, radiation therapy (peri-aortic & pelvic 27.3 Gy)
                            TC2: 2008, left orchiectomy, seminoma stage IA 5 cm mass, left & right prostheses, AndroGel TRT, surveillance at MSKCC

                            Comment


                            • #15
                              thanks will do

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