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my seond coming up

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  • my seond coming up

    I can't believe I am writing this but I just got back from the ER and they did an UltraSound and said there is a definite mass growing on my survivor. I did BEP x3 for 80% EC and 20% sem (I think) back in 2013 and have been fine since. I am seeing my surgeon/urologist Wednesday after the holiday first thing but the urologist on call that works with him seems to think they would want to look at a partial orchiectomy since it does look promising to him. The other part of my testicle is still squishy and normal. It isn't like my first one that it was all rock hard. I was also a stage 3 with a lump in my neck too though I guess.

    Well thanks in advance for the help. Happy New Year.

  • #2
    Partial orchiectomies are very rarely done. Even if successful, your risk of recurrence is likely pretty high, since you have had two primary TC's already. My doc suggested the posibility & I said no. I didn't want the traitor to have a second chance to try & kill me.

    If you do go that route, be religious abut self checks, maybe even consider periodic US testing.

    BTW, having no testicles is not much different than having testicles, life goes on petty much as before.

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

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    • #3
      I guess I’m just really worried it spread like last time. I already took out the big guns with BEPx3. I’d be really worried to have to do anything more than one more round of anything. I feel terrible today.

      Comment


      • #4
        I’m sorry man. If I were you I’d be looking at the best option to get rid of it and that probably is full removal. I’m not sure I’d want a testicle with a scoop out of it.

        Prosthetics are an option as you may know. Testosterone replacement is well known. Are you trying to maintain some fertility? Can you do sperm banking now?
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        06DEC16 - CT scan clear
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

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        • #5
          I wasn’t able to bank sperm the first time and I never went back to try again so I have no idea if I can produce again or not.

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          • #6
            Just got my results. My markers are all normal but I do have a 1.9 size lump on the survivor. Surgery will be on Friday to remove.

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            • #7
              So they moved my surgery until Monday. Is this a big deal 2 more days? I really wanted it to be on Friday but they said my doctor double booked himself. He really is an amazing doctor. I’m just worried it will spread over the weekend. The testicle is starting to feel pain at night time and the size is slightly larger.

              So can any 2x people walk me through this. Tumor size is 1.9 (is that big?) and my markers are all normal. Without the PET/CT and pathology I know we don’t know if I’ll need chemo but with my markers normal and all of us are pretty sure I caught it early I’m thinking worst case maybe stage 1b if it’s non-semonia. And I would technically need maybe 1 BEP or something different since I already had 3 bleomycin? I really hope I don’t need chemo but my first TC was immediate stage 3 since it was in my neck so I never really bothered looking at anything below that. I just always knew it was BEPx3. Doubt I’m a stage 3 again.

              I meet with a fertility specialists tomorrow. They will see if I am producing and run my testosterone numbers. I can report back once I have them. Anything I should be asking them besides giving me my T prescriptions that day?

              They also said I may not be producing but they are willing to bet there could be sperm inside the testicle. So they will salvage what they can out of it for IVF later on.

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              • #8
                Fertility check came back as zero. I will not not have I ever been able to freeze any.

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                • #9
                  All you need is a small number of sperm for IVF. I’m hopeful they will find some in the testicle.

                  The one thing I’ve heard is that people get sent home without testosterone replacement prescription filled.

                  Are you doing prosthetics?
                  Age 31 - Portland, OR
                  01NOV16- Pain in right testicle, palpable mass
                  13NOV16- R I/O. Markers normal
                  27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                  06DEC16 - CT scan clear
                  09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                  03JAN17- Ended 1xBEP; start surveillance
                  18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                  Comment


                  • #10
                    How did you go with the op? Did you get testosterone prescription?

                    Hopefully, you're in a good place after you do your CT scans etc for staging as you would have been monitored closely after the 1st one!
                    July 2016 - Left I/O
                    December 2016 - BEPx3
                    All clear for 1 year!

                    My Testicular Cancer Support Kit
                    First Oncologist Visit Checklist
                    3 Things I Wish I Knew Before I Started Chemo
                    3 Reasons Why People Disappear From Your Life During Cancer
                    Simplify Cancer Podcast

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                    • #11
                      Originally posted by mcintoda View Post
                      All you need is a small number of sperm for IVF. I’m hopeful they will find some in the testicle.

                      The one thing I’ve heard is that people get sent home without testosterone replacement prescription filled.

                      Are you doing prosthetics?
                      Apperantly if they mess around with the testicle after it comes out looking for sperm, it makes it harder to do a pathology. My doctor is gonna let me know about what they think we should do. They don’t want to risk the pathology report for something that most likely isn’t there. I’m not so sure how it would effect pathology but I’ll find out tomorrow.

                      They put me on androgel for now but think because I swim and surf a lot that the shots might be my best bet or the pellets. The pharmacy called and said they needed insurance approval.

                      I will have a second prothestic put in.

                      Comment


                      • #12
                        Originally posted by JoeTheAstronaut View Post
                        How did you go with the op? Did you get testosterone prescription?

                        Hopefully, you're in a good place after you do your CT scans etc for staging as you would have been monitored closely after the 1st one!
                        My surgery will be Monday at 1pm and I’m hoping to get a PET/CT by the end of the week.

                        Comment


                        • #13
                          So sorry! Dave (Davepet) should be able to offer guidance as a 2xer. I saw he replied above. Keep us updated.
                          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.

                          Comment


                          • #14
                            Originally posted by Trekga View Post
                            So sorry! Dave (Davepet) should be able to offer guidance as a 2xer. I saw he replied above. Keep us updated.
                            I’m just worried about having to do chemo again and what my body is able to handle after BEP x 3. I’m on my knees praying for just the surgery and removal and surveillance after only.

                            With my tumor markers normal I feel I stand a decent shot but it’s growing bigger by the day just like the last time I had 80% EC and that scares the **** outta me.

                            Comment


                            • #15
                              One question: What was the reason for the original ER visit? Assuming it was testicular discomfort, how long did it go on before you went?

                              Low markers are good, but as you know, they do not rule out spread.That said, you probably caught it early this time, so there is a decent chance that surgery will be the end, if it is not, you will likely need one of the alternate chemo treatments, as there are lifetime limits on BEP. Also, a 2 day postponement is unlikely to make a difference in your stage. While theoretically possible, I wouldn't be concerned., you will most likely be the same stage on Monday that you were on Friday, whatever that was.

                              There is a generic version on Androgel now that is a bit cheaper, I actually found it worked better for me. With the gels, you just need to wait a few hours before swimming & they will work fine, it gets absorbed into the lower skin layers by then & does it's job throughout the day. Pay no heed to the warnings about transference after the first few hours, it is boilerplate required by the lawyers, not an actual problem.Due to my insurance coverage, I moved to injections a few years ago ( they would only cover Testim, which I found unpleasant to use due to the odor). I feel the topical worked a bit better, but the injections are more convenient at one per 3 weeks. I learned how to do self injection so I don't need to set up an appointment every 3 weeks. It is easier than you'd think. In your case, I'd start with the androgel, (consider the generic "testosterone gel") & see how it works & decide from there.

                              I'm glad your docs are on top of the trt. Mine were not, & believe me, I will never again laugh at jokes about hot flashes. Extremely uncomfortable, to be nice about it.

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

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