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  • Dont know what to expect

    I found a ball bearing type lump on righty, and it is definately directly on the testicle. my uro took a look today and immediately said I need a sono. I could tell that he beleives it's not good but wants the sono just to confirm his and also my initial worries. I hope it's not too advanced as I found it recently during a TSE and it's pretty small. I can deal with the fact that I will need to have it removed, but I worry about my T levels and libido, erection etc. Also, it amazes me how many girls are on this forum supporting their husbands and boyfriends and the amount of people who tell their stories and how many of them have girlfriends. Is TC a death sentance to your sex life? I am so worried about chemo and loosing weight and hair. What kind of girl will I be able to find with one testicle and skinny and unhealthy. How do you guys deal with it? Is it possible to beat it and go back to working out, having hair and mingling?

    Sorry to be so negative, these are just the fears I have and I'm sure everyone else here had the same fears...

  • #2
    Hey Miller...welcome!

    First off...I have been through four rounds of chemo and all my hair came back just like it was before. I also gained a little weight from some of my drugs, too. As for the sex drive...my wife would submit it was higher than normal while I was going through chemo (mu-haha!!). So no worries there...at least there weren't for me.

    I'm a little different, though, in that I still have both testicles (at least for another week). My understanding is one testicle still provides enough testosterone so your libido/sex drive shouldn't be affected.

    Besides...until you know if you have TC and what flavor it is...you might only need the orch followed by surveillance.

    Keep us posted!
    Last edited by NavyHoldi99; 05-31-07, 07:37 PM.
    Brett, Stage IIIB Non-Seminoma Extra-Gonadal Germ Cell Tumor 7/12/06, 4xBEP 7/31/06 - 10/17/06, enlarged retroperitoneal lymph nodes found 5/22/07, bi-lateral RPLND and Left I/O 6/05/07, 2xVIP 7/16/07 - 8/11/07, spot on spleen found 9/13/07 - DOH!, PET scan sked 10/29/07

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    • #3
      Hey Miller,

      First off, I just want to let you know that it may not be cancerous....there is always hope. I'm glad you are looking at the big picture, though, and asking the tough questions.
      As an active 23 year old, I was recently diagnosed with TC and had to have my left testicle removed. Like you, I was worried about testosterone, libido, body changes, chemo, etc......I can't tell you what happens to all guys, but I can tell you about my experience.
      It is now about a month after my surgery, and I honestly feel no difference in my body chemistry. I have the same amount of energy, I haven't had fluctuations in my weight, I haven't lost any muscle, I grow facial hair at the same speed I always have, and my sex drive is the same as it's ever been. If I didn't know I physically had a testicle removed, I wouldn't be able to tell any types of difference in my body or my mind. I feel very blessed.
      There is absolutely no need to worry about the way women will react. Any woman who can't deal with the situation is waaaay too shallow, and doesn't deserve you in the first place. I have a girlfriend of 5 years (today is our anniversary actually) and she has never been anything but supportive. I spent the last 2 weeks with her back at home, and I'll be the first to tell you that nothing has changed about my performance.......she will second that I'm sure . The only concern she had, other then my health, was if I would be able to father a child with her should we get married, which I'm told isn't effected by an I/O as long as the other testicle is healthy. And look on the bright side, chicks dig scars!
      I was lucky enough to have a seminoma, and to have caught it very early, so I didn't have to go through chemo or radiation (knock on wood), so I can't tell you about the effects that those procedures would have on your body. The good news, if you want to call it that, is that many people in this forum have had those experiences and would be happy to tell you about them.

      I hope this helps, and gives your some reassurance! Things will work out, as long as you fight for them to.

      Bobby
      4/26/07 - mass confirmed w/ no elevated markers
      4/27/07 - left I/O
      5/2/07 - Dx: 100% seminoma stage 1A
      Surveillance: CT/blood (6 month cycle)
      4/27/13 - 6 years cancer free!

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      • #4
        Hey Miller,
        Welcome to the forums. Although it's still up in the air whether you actually have TC or not, I will concur with what Bobby and Brett have posted. By and large, testicular cancer is perhaps the most treatable and curable of all cancers out there. The treatment regimens have been so thoroughly vetted that a cure is almost always possible. The important thing is that if you indeed have TC, you need to be very diligent with the treatment: the earlier you catch it, the easier the road to the cure.
        Right now you are getting a bit ahead of yourself. TC is rare (< 10K cases a year in the US), and you need to undergo several tests before a call can be made. The ultrasound will determine the nature of the mass. If it is solid (the ultrasound will tell that), then there is, unfortunately, a 95% chance it could be malignant. That being the case, you would be scheduled for an inguinal orchiectomy to remove the suspicious testis, and you will have prior to that several other tests to determine staging and possible spread (bloodwork for tumor markers, pelvic and abdominal CT scan and possibly a chest X-ray). Once all the radiology, bloodwork and pathology from the orchiectomy specimen are obtained, a course of treatment will be traced. The important thing is that you have gotten the process going. Keep your cool, and if cancer is suspected, rest assure that it is quite likely you will be cured. Hang in there. We're here for you.
        "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
        11.22.06 -Dx the day before Thanksgiving
        12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

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        • #5
          Good morning Miller. From a woman's point of view (if you want it ) my husband and I went into this journey with some of your same concerns.

          First of all, losing the testicle was less tramatic than he thought it would be and we both hardly notice that it is missing. He does not look really different to me. He said he would never get an implant because he still feels very much 'whole', if that makes any sense.

          The chemo did make him loose his hair, but all the ladies at his office thought he looked 'hotter than ever' and he loved all the comments. He always looked great to me. Bald in so in right now anyway. But he did not get skinny or look really sick. He just looked tired and he gained back the few pounds he lost after chemo ended. Actually, he did not loose much if at all during chemo (which I have found is true for most people), he lost the most post surgery when he had his RPLND.

          His sex drive was and is fine. He is almost the same as before he got sick. Performance for him did not change at all. TC will change your life, and your concerns are vaild....but I think you will find that physically you stay about the same. My hope is that you don't have TC and it is something else. But I wanted to address your concerns because I know others may have the same questions as you. I think I remember "Already Bald" posting once before that his love life was even better after TC...so that should ease your mind.

          If any woman does not want to be in your life because of TC, then I promise you, she is not worth having. Holler if you have any questions and we are all here for you.

          Margaret
          Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
          Current DVT
          Current testosterone replacement therapy, Testim.

          "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

          Comment


          • #6
            TC Confirmed

            Thank you for the responses, sono proved a solid mass in righty 1.2x1.4x? cant remember the last. Uro said looks pretty early, I noticed the lump and 2 days later i was getting the sono. Monday is the removal, really nervous. I just hope the cancer is confined. I also hope they remove the right one! they took blood after the sono and I asked them to test my T levels as well for a baseline. the doc said if there are markers, then it's more than likely seminoma, what? someone please shed some light on this

            scared

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            • #7
              Originally posted by millerj1981
              Thank you for the responses, sono proved a solid mass in righty 1.2x1.4x? cant remember the last. Uro said looks pretty early, I noticed the lump and 2 days later i was getting the sono. Monday is the removal, really nervous. I just hope the cancer is confined. I also hope they remove the right one! they took blood after the sono and I asked them to test my T levels as well for a baseline. the doc said if there are markers, then it's more than likely seminoma, what? someone please shed some light on this

              scared
              I can't speak to the markers and seminoma side of the house...but I had elevated markers with non-seminoma. They test bhCG, AFP, and LDH. My bhCG was close to 24,000 (normal is less than 9 I think). My LDH was above 500 (normal is low 100's to mid 200's I think). My AFP was 92.

              I don't have the units of measurement on the top of my head and to be honest...I don't know if different places use different units. I think Fed actually works at a cancer clinic so he can probably shed better light on this.
              Brett, Stage IIIB Non-Seminoma Extra-Gonadal Germ Cell Tumor 7/12/06, 4xBEP 7/31/06 - 10/17/06, enlarged retroperitoneal lymph nodes found 5/22/07, bi-lateral RPLND and Left I/O 6/05/07, 2xVIP 7/16/07 - 8/11/07, spot on spleen found 9/13/07 - DOH!, PET scan sked 10/29/07

              Comment


              • #8
                Originally posted by millerj1981
                the doc said if there are markers, then it's more than likely seminoma, what? someone please shed some light on this
                You may have heard wrong? If AFP is elevated, it's non-seminoma. If hCG is elevated, it may be seminoma or non-seminoma.
                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


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                • #9
                  size matters?

                  does the size of the initial sono findings give any light to the extent of the staging, i would think a small tumor means that I found it rather early?

                  Comment


                  • #10
                    Originally posted by millerj1981
                    does the size of the initial sono findings give any light to the extent of the staging, i would think a small tumor means that I found it rather early?


                    This shows the treatment protocol for different stages of the disease. Towards the end it shows how staging is accomplished.
                    Brett, Stage IIIB Non-Seminoma Extra-Gonadal Germ Cell Tumor 7/12/06, 4xBEP 7/31/06 - 10/17/06, enlarged retroperitoneal lymph nodes found 5/22/07, bi-lateral RPLND and Left I/O 6/05/07, 2xVIP 7/16/07 - 8/11/07, spot on spleen found 9/13/07 - DOH!, PET scan sked 10/29/07

                    Comment


                    • #11
                      miller:
                      Small tumors are certainly better but you need the scan and xrays to find out if you had any spread. If you want to make sure they take out the bad testicle put a sharpie mark on your groin indicating which side. You know something like man at work here, with an arrow and a notice that fines are doubled in a construction zone.
                      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.

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                      • #12
                        Haha, I made sure 3 separate nurses, the anesthesiologist, and also my surgeon were all sure which one was coming out........i wasn't taking any chances.

                        Bobby
                        4/26/07 - mass confirmed w/ no elevated markers
                        4/27/07 - left I/O
                        5/2/07 - Dx: 100% seminoma stage 1A
                        Surveillance: CT/blood (6 month cycle)
                        4/27/13 - 6 years cancer free!

                        Comment


                        • #13
                          i'll put it this way - after surgery, chemo etc...I'd never give back the experience, as crazy as that might sound...

                          I am doing fine, surveillance wise...but the odds are with TC you will be fine...maybe a bump in the road for you...but fine in the end...

                          Just came back from a run, feel fine...sex life, fine...hair loss...who cares, it came back...being bald was pretty convenient, it's just hair. Skinny - if you do lose weight, great...when it's done you can start over and get in shape.

                          yes, still deal with surveillance...but these were the cards I was dealt...make the best of it.

                          Just answering questions and getting OM's from this board and talking to new cancer patients is far more rewarding than most any job you will ever do.

                          Pete
                          - lump first noticed 11/20/2005
                          - I/O right Dec 8, 2005
                          - 95% embryonal / 5% seminoma
                          - normal markers PRE surgery
                          - no vascular invasion, tunica free of cancer, epididymis free of cancer, lungs free, lymph free
                          - Stage I diagnosis
                          - surveillance
                          - mid feb '06, beta hcg slightly elevated = 4.6...small enlarged lower node seen on CT scan...
                          - 3BEP began feb 20, 2006
                          - finished 3 BEP, last bleo, april 17, 2006
                          - CT scan, blood markers, chest..all clear
                          - back on surveillance

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