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  • General post-treatment malaise

    Hi all! It's been a while since I've posted, so hello again and I hope your holidays have been going well. It has now been just about 5 months since my IO and almost 3 since finishing RT (for stage I seminoma).

    Basically, I'm not thrilled with where things are right now. I feel like my implant is not settling in well -- it feels a bit too big and definitely too firm (I understand the firmness is just part of the nature of the implant however) ... and 5 months out, it's still a bit tender and contributes to a general discomfort if I'm sitting in the same position too long, or wearing tight jeans, or of course during sex. My urologist (whom I do not hold in very high regard) was very dismissive of my concerns and when I told him it feels like the implant is too big, he felt it and said "it feels fine to me." I told him that he may be an expert on urology, but he's not an expert on how my balls are supposed to feel. Sometimes I entertain the thought of having it removed but I've always told myself I'd wait at least a full year before even considering it.

    In addition, and I've tried to look this up in previous posts, but I feel like I still have some lingering physical/emotional residue from the whole experience. I'm not married nor do I have a steady gf and my sexual activity since this process has began has been sporadic at best. Part of that might be because I'm still a bit self-conscious about everything and therefore, I'm not pursuing it very intently. I'd much prefer to find someone to get into a steady long-term relationship with, with all of the comfort and trust that it would entail -- but that's a whole other story.

    Anyway, those few times I've been sexual in the past several months have been a little less than great for me -- the mild discomfort is a constant distraction, and I've also "gone soft" after not too long -- something that had never happened to me in the past. I only found a few references to this in other posts and they seemed to be related to medications etc. -- none of which I am on at the present moment.

    So I'm just fishing for a little common experience. Has anyone else had a kind of "long road back" experience like this? For those of you without spouses or steady committed love interests, how has it been returning to the dating world (and the sex that accompanies it)?

    Happy New Year everyone -- and thanks for "listening" -- !
    Scott
    Right I/O 8/1/06
    Stage I Seminoma -pT2 (Size 4.2 x 3 x 3 cm) w/vascular invasion
    Adjuvant Therapy: RT 9/18/06 - 10/5/06
    All Clear #1: 5/15/07
    New CD available on CD Baby and iTunes! (Visit michellehotaling.com for more info)

  • #2
    prothesis

    hi,
    it would appear i'm in the same boat as you . i'm 2 months past my op and 4 weeks past chemo (carboplatin) . I agree with u when u say the size and feel are quite unrealistic, i'm also single and the thought of getting back out there dateing is a scary issue at the moment . But hopefully through time these fears will disapear . so atleast u've made the start , hang in there and i hope and pray it getts better for u in the long run. The thought of having it removed has also crossed my mind but don't know if i could go through another op


    craig

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    • #3
      I will admit that I'm in a rush and I didn't fully read any posts but damn it sometimes it is about you and what you need. If it doesn't feel right get it fixed or removed. My wife has had an awful year and I told her just a few minutes ago that this year is about her. You deserve it and so does everyone who has been sick.
      Last edited by dadmo; 01-14-07, 07:42 AM.
      Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

      Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

      Comment


      • #4
        I opted out of an implant in the final moments before going under... funny story there too... the doctor asked me 3 times to be sure . I've never once regretted my decision, and I look almost normal except for the hottest of days where my survivor is hanging low. Give it a 1 year mark, and if you still hate the fakie, lose it... but definitely ask your surgeon if you could keep it, it would make a neat conversation piece...maybe you could even bronze it!

        The lingering feelings you have I have as well, almost 3 months out. I opted for surveillance, so I'm also a bit more paranoid. I have felt down, and low energy, but sexually I'm fine, mainly because of a wonderful and understanding partner/fiancee. So for the low energy I talked to my uro about a month after surgery about having my testosterone level checked, and he told me thatt it is common to feel down for many months after the diagnosis. In turn, this could cause T levels to drop, so he NEVER recommends checking levels or replacement during this time. He didn't want to use the word 'depression' because he said that these feelings are common in all of his patients and they will subside after a few clean follow-ups (provided they stay clean).

        I saw a fatal head-on collision last night while I was returning from my girlfriend's home. I can only think that the people involved had a nice day, and were not thinking about their mortality that particular day. It's a bit harder for us, but the bottom line is that you do have to get out and live your life.

        I agree, you should definitely meet girls, and try to find someone compatible with you. It will be so much fun... and live your life. Give this time to heal, too, but definitely go out and do the things you enjoyed doing before the TC... no excuses!

        I ran today... I hadn't been running because I was convinced that my vertebrae were compromised with spread seminoma, or that I had a disc bulge. MRI showed neither and my GP threatened me with buspirone if I didn't start running again... so that's were I am right now

        Best of luck in 2007 and every year thereafter! May all your followups be clean!

        djm
        Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

        Comment


        • #5
          Scott,
          I think when you're delaing with the diagnosis, surgery and RT, you're mind is in a fighting mode and that changes when you go to the surveillance phase. I have been more proactive with my husband's TC than he has, strage as that may sound. After my husband finished RT was when I really felt down. The fight was over (hopefully) and now it's just wondering if there will be a recurrance or secondary malignancy somewhere in his future and waiting anxiously for the "all clears".
          If your implant bothers you, get it out now. Women really aren't all that awestruck by testicles....there are other distractions One, two, or none will not matter to anyone who cares about YOU.
          Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

          Comment


          • #6
            Hi everyone and Happy New Year! And thank you for the great responses ... I've indeed thought about removing the implant but I'm still getting bills I shouldn't be getting for the first round of treatments ... I can't imagine the logistical nightmare, let alone the final cost, of opting for voluntary surgery to remove it ... but like I said, I think I'm going to wait a full year before I decide. It actually helps my psyche that I didn't get the implant for anyone else, I got it for myself ... although I was hoping that having it would remind me less about what I had gone through, not more ...

            Anyway, no matter what happens, I know I'll be fine. I feel like part of me is still trying to "fit" cancer into who I am as a person. And there are still a lot of healthy as well as unhealthy thoughts bouncing around up there, which is the part that makes dating difficult more so than any physical reminders ... my scar doesn't bother me, nor does my still-mostly-bald radiation treatment field -- or my "reverse happy trail" as I call it -- ! I just wanted to see if I couldn't start a discussion relation to the challenges that some guys on here are facing who aren't currently in long-term committed relationships and don't have that type of support/comfort.

            Happy 2007!!
            Scott
            Right I/O 8/1/06
            Stage I Seminoma -pT2 (Size 4.2 x 3 x 3 cm) w/vascular invasion
            Adjuvant Therapy: RT 9/18/06 - 10/5/06
            All Clear #1: 5/15/07
            New CD available on CD Baby and iTunes! (Visit michellehotaling.com for more info)

            Comment


            • #7
              Great series of posts, Robert. Thanks for sharing so much of your story!
              Scott, [email protected]
              right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


              Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

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              • #8
                Originally posted by Scott
                Great series of posts, Robert. Thanks for sharing so much of your story!
                Robert,
                Thanks for sharing this...you were a mystery man at the beginning!

                My husband did not get an implant and I'm glad he didn't. Neither of us even gav it much thought. I have a difficult time imagining that it would matter to women you date and I would think it wouldn't always be "comfy" during sex for either person.
                Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                Comment


                • #9
                  Just before my sons surgery we asked his urologist about an implant and he told us that no one makes them anymore!

                  Son Anthony DX 12/11/06
                  L/O 12/20/06 Stage IIIA, 95% EC, 5% Yolk Sac
                  4XEP 1/29-4/6/ 07
                  AFP started increasing3 wks later
                  Residual abdominal mass found on CT
                  RPLND 6/8/07
                  Cancer in pathology-
                  80% mature teratoma, 20% Yolk Sac. --
                  No adjuvent chemo and
                  AFP normalised

                  July 22, 2010 ---- 3 years all clear!

                  Comment


                  • #10
                    Is he sure? I believe Coloplast (previously Mentor) and Silimed do.
                    Scott, [email protected]
                    right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


                    Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

                    Comment


                    • #11
                      Wow!

                      What a great series of posts ... you're the best Robert! Believe me, at no point should you worry about how I am being "affected" by my cancer. Because for me, it feels like more of a matter of how I am choosing to steer my life -- not that I was "affected" by it, but rather, that I am still firmly in the drivers' seat.

                      What you said in post #2 certainly hit it on the head. At almost no time in this whole process have I felt depressed -- which is why I carefully chose the words "general malaise" ... not a euphamism at all -- !! Don't get me wrong, I had a few "why me" moments (I think we all do) ... but it's definitely true that the process rushes by at such a speed that there really isn't time to contemplate it at all until everything is done and then it all hits you.

                      Oh -- to clarify something I've seen come up a few times here; there are no, repeat no, decisions I made during this process based on what other people might think. By this I am referring specifically to the issue of whether women care if a guy has one testicle or two. I know they don't care. And even if they did care, I don't think I would care that they cared. I actually did read everything on the TCRC site regarding the implants before I made my decision. I found it fascinating and incredibly informative but ultimately it did little to help my decision because the stories were fairly equally split between both good and bad experiences, both with and without the implant. Of course, I knew all along that the decision is a very personal one and that anything I read online wouldn't be making the decision for me. I chose the implant -- not because I was worried about what some future female might think -- but because I was trying to do everything in my power to make things as normal as possible for me. Unfortunately I did not see much in those stories about the kinds of issues I was having that prompted me to create this thread in the first place. (Side note: I DO wish that my urologist had handed me the implant he was planning on using prior to the surgery, as seems to be the case with many people here. I'm pretty sure I would have requested a smaller one).

                      I just want to reiterate that there was NEVER a chance of me being a victim of this. I have understood for years now that everything comes into our lives not only for a reason, but for a positive one -- for something that is ultimately designed to help us out. In fact I (sometimes) distance myself from the term "cancer survivor" because I don't like the idea of defining myself by something that affected me in my past -- defining myself via an illness -- but of course having come out the other side, I realize that "survivor" is the operative word here -- and I do gladly and proudly use the term -- but only insofar as it highlights the "survivor" and not the "cancer". I hope that makes sense.

                      I'd still love to hear from those of you in the dating world -- the real nature of my post was not to talk about depression or whether women care if there's an implant or not (although those have been fantastic side-threads which have been very valuable to me and, I hope, to many of you as well). It seems that most people on here (or the ones who are posting anyway ) have steady significant others which, emotionally and physically, I imagine would take some of the edge off of this whole experience. I'd love to compare notes with others who are still in the dating pool -- there are undenyable physical changes that come along with this, i.e. the implant feels "odd", it's still a bit sore, etc. ... and truth be told, when there is anything even slightly out of the ordinary when you're about to have sex with someone for the first time, it is definitely on your mind. I wouldn't care one iota that I had a fake ball except for the fact that it is definitely still a bit tender. Luckily, the incision scar itself stopped feeling strange a few months ago so that's no longer part of the picture. But I also do know that ejaculating still feels different too and I'm hyper-aware of it ... It's really strange how much you don't realize you're feeling down there, until one of them gets taken out and the absence of those nerves and that half of the process becomes very apparent. It did to me, anyway. I know that in time I'll never notice it again -- I just haven't arrived there quite yet.

                      In addition, I don't ever feel strange "admitting" to someone that I've had testicular cancer; in fact, right after my passion for creating music, it's one of the first things they learn about me. It's part of who I am, and certainly not in a bad way. I prefer to be an open book because I'd rather be read than gather dust on the shelf!! So that's definitely not an issue for me either.

                      I know I'm blessed, and I've known it for years. I knew it while I was in treatment for cancer. I even knew it as I was being diagnosed for the first time. Cancer doesn't define who I am; rather, I am choosing to define myself by whatever terms I see fit now that cancer has been one of my many experiences on this earth.

                      I don't necessarily have a point in all of this, but I wanted to be sure I responded to the wonderful replies that have made their way on to this thread. You guys (and gals) are the best and I know I'm very lucky for having stumbled on this site.

                      Much love,
                      Scott
                      Scott
                      Right I/O 8/1/06
                      Stage I Seminoma -pT2 (Size 4.2 x 3 x 3 cm) w/vascular invasion
                      Adjuvant Therapy: RT 9/18/06 - 10/5/06
                      All Clear #1: 5/15/07
                      New CD available on CD Baby and iTunes! (Visit michellehotaling.com for more info)

                      Comment

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