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  • New guy having I/O in 2 days

    Hi everyone. Glad to have found this community.

    I'm having an orchiectomy on Wednesday, and I'm a little overwhelmed with all this, but trying to stay positive. I felt healthy 7 days ago. I'm 35.

    I went to the doctor Tuesday Feb. 27, a couple hours after some pain in my testicle started and worsened. They sent me right over for an ultrasound which revealed two hard masses, and I was referred to a urologist. He certainly did me no favors pain-wise, but after a blood test, he said (on Friday) that he's 95% sure I have cancer due to the hard masses and an elevated AFP level (the other two markers were ok). So we scheduled surgery. Fortunately the pain has reduced to tolerable in the meantime.

    It's encouraging to know that so many survive this, but it sure sounds like it can be hard to get there. And it's hard to keep from thinking "what if I end up in the minority that doesn't make it..."

    I don't know of anyone near me who's gone through this, so I thought I'd introduce myself here. My wife and our family and friends are supportive of course, and my kiddo is a welcome distraction, but it's really nice to know you all are here. Thanks for being here!
    2/27/18 Pain in left testicle, hard masses in U/S, elevated AFP
    3/7/18 Left I/O
    Stage 1B non-seminoma, post-op AFP normal
    4/2/18 BEPx1

  • #2
    Sorry to hear you're going through this, but hope the procedure goes well as it should and that this is the last you hear of it!!
    July 2016 - Left I/O
    December 2016 - BEPx3
    All clear for 1 year!

    My Testicular Cancer Support Kit
    First Oncologist Visit Checklist
    Simplify Cancer Podcast

    Comment


    • #3
      Take it one step at a time! Thereís a good chance after surgery you will be cured and if not the cure rate is still very high. I was where you were a year ago and Iím healthy now!
      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

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      • #4
        Welcome. Unfortunately, you are kind of in the hurry up and wait period that is full of uncertainties and that doesn't help the mind from wondering. if I was in your shoes I would expect nothing but a successful outcome but it is just a matter of how much crap you have to go through to get there. At this point we just can't even estimate it. Do you have any idea what your AFP level is? Did they do any CT scans/Chest X-Rays yet?

        Getting the information you need to figure out exactly what is going on is going to trickle to you over the nest week or two so if it were me, I wouldn't worry unless the doctor tell you that you have something to worry about. I know that is easier said than done.

        Surgery should be short and with a quick recovery. Just be sure to keep ice on the incision as that will help. If you are on narcotic pain relievers, then be aware that you may need a stool softener or laxative as they can be constipating. A little TMI tip, it hurt to cough and laugh after surgery and I feared the pain that would come when I took a crap but good news, no pain at all.

        Keep us posted and we can help you along with each bit of information. If need be, (I am not sure where you live) we might be able to find a local survivor for you as well.

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

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        • #5
          You are on the right track, keep your chin up and you will get through it!
          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15 - 9/18/15: 4xEP
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          3/29/2018 all clears up to this date!

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          • #6
            Originally posted by Andrew82 View Post
            It's encouraging to know that so many survive this, but it sure sounds like it can be hard to get there. And it's hard to keep from thinking "what if I end up in the minority that doesn't make it..."
            Sounds like you caught this early, there is no reason to start thinking the worst, in fact I believe a positive mental attitude is beneficial.

            Just off my cuff, I'd estimate that a majority of guys these days are cured with the I/O or opt for a round of adjuvent chemo to be more sure. Certainly, it *can* be more difficult, but it's too early to go there right now. Lets get your AFP #'s, Path report from the I/O, & CT scan results & we will help you as best we can to navigate what's next.

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

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            • #7
              Hi Andrew. I had my surgery two weeks ago. Just focus on getting wife and work ready for time of surgery. After surgery relax. When the reports come take it from there.

              Comment


              • #8
                Thank you all so much for your responses. They help more than I even expected.

                Mike, you asked a couple questions. My lab report shows that the AFP was 13.6 ng/mL, and that the normal range is 8.3 or lower. From looking around on here, it sounds like 13.6 is still relatively low so maybe that's a good sign even though it also sounds like AFP can be tricky? And I haven't had a CT or chest X-ray for TC yet, although I did have both of those done in the ER about six months ago (we were looking for a potential blood clot), and they said both looked good.

                I'll post an update after surgery and then post in the "recently diagnosed" section when we get the pathology report! Thank you again!
                2/27/18 Pain in left testicle, hard masses in U/S, elevated AFP
                3/7/18 Left I/O
                Stage 1B non-seminoma, post-op AFP normal
                4/2/18 BEPx1

                Comment


                • #9
                  An AFP of 13.6 is probably not clinically significant by itself, but the U/S results are. As I said before, you have likely caught this early. The I/O might be all you need.

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

                  Comment


                  • #10
                    That would certainly be great. Fingers crossed. Thank you!
                    2/27/18 Pain in left testicle, hard masses in U/S, elevated AFP
                    3/7/18 Left I/O
                    Stage 1B non-seminoma, post-op AFP normal
                    4/2/18 BEPx1

                    Comment


                    • #11
                      Until pathology, CT Scan/chest x-ray, and repeat bloodwork- you are in the waiting period everyone has mentioned. Fingers crossed that you will need just surveillance.
                      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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                      • #12
                        IO is done and went well! Now home in bed with ice pack. I'm told we'll have preliminary (cancer vs no cancer) results in a few days, at which point we'll schedule CT/Xray if needed. Full pathology report will be a week from Thursday.
                        2/27/18 Pain in left testicle, hard masses in U/S, elevated AFP
                        3/7/18 Left I/O
                        Stage 1B non-seminoma, post-op AFP normal
                        4/2/18 BEPx1

                        Comment


                        • #13
                          Trekga, I'm very happy to see your son Grant is cancer free in his senior year! Thanks for your note!
                          2/27/18 Pain in left testicle, hard masses in U/S, elevated AFP
                          3/7/18 Left I/O
                          Stage 1B non-seminoma, post-op AFP normal
                          4/2/18 BEPx1

                          Comment


                          • #14
                            Hi Andrew,
                            I had my left radical inguinal orchiectomy last Thursday!!! Fun fun .urgh. 39. Adelaide, Australia. Found lump Dec17. Scan's in Feb showed it grew and got blood flow now.
                            I see my urologist that did the surgery, next Thursday, hopefully hw will have the biopsy results.
                            My lump was found early. It had vascularity, I had no positive blood results, I don't know what is likely to happen.
                            Im just hoping the lump is the only one in my body.
                            Good luck with your results buddy! I'll let you know how I go.

                            Comment


                            • #15
                              Glad to hear I/O went well for you, Andrew and you too, Jim!! One thing out of the way, hopefully you won't need anything after this. Good luck with your results, get plenty of rest if you can!!
                              July 2016 - Left I/O
                              December 2016 - BEPx3
                              All clear for 1 year!

                              My Testicular Cancer Support Kit
                              First Oncologist Visit Checklist
                              Simplify Cancer Podcast

                              Comment

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