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  • #16
    I can pass on what Dr. Hanna told me about the idea of adjuvant chemo after RPLND. He said, roughly, "if you'd do that, why not just do adjuvant chemo before RPLND?" The point of choosing RPLND is that about 3/4ths of the time, it's curative even if you have some disease, and you're trying to avoid chemo. I think you're doing the right thing. Especially since the difference between 2 cycles of chemo and 3 isn't that large. A 25% chance at 3 cycles beats a 100% chance at 2. Wishing you the best.
    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
    12/8/16 Diagnosed with TC in left testicle.
    12/9/16 Left I/O.
    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
    2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

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    • #17
      Had my ct and tumor markers drawn yesterday. Clear and normal! Super exciting news. I also had my testosterone checked, its way low for my age. Unfortunately I have never checked it before now, but doctor says if the next draw in a week is low (and likely will be) we will start treatment. Im actually excited for that aswell, because I will feel better. Starting the week off on a couple good notes!
      11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

      Comment


      • #18
        Hi Joe, Congrats on the clear CT + markers. Very happy to hear that! It looks like you and I are on fairly close time-lines. My IO was 12/9 and robotic RPLND 1/26. My urologist convinced me that it's common enough for T-levels to be low for a little while after IO (mine is at 262 -- pretty low for early 30s). I'm going to at least wait for several months and recheck without going into treatment. Keep us posted on your progress if you do choose to do treatment for the low T. I'd really like to see how it's going for you -- might make me re-think my wait-and-see approach. Thanks.
        11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
        12/8/16 Diagnosed with TC in left testicle.
        12/9/16 Left I/O.
        1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
        1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
        2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

        Comment


        • #19
          I feel like a zombie compared to the way I used to feel. Both my primary doctor and urologist agreed that treatment will more than likely be needed. Im 29, from my research I should be in the 600s. Im sure thats where I was before. I've been having hot flashes, fatigue, irritabilty, low mood...yeah. Zombie lol. I couldnt be more than thrilled that theres an explanation for it and treatment. If you feel good I wouldnt worry about it, but if you feel like I do, I wouldnt wait. I will keep you posted on how its going for sure.
          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

          Comment


          • #20
            Mine was 279. Also lack of focus, poor motivation, and my left testicle is considerably smaller than it hsed to be, and its tender to the touch and always aches...probably going to ask for an ultrasound of it to make sure theres no funny business happening
            11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

            Comment


            • #21
              Originally posted by Joe.shupe22 View Post
              Had my ct and tumor markers drawn yesterday. Clear and normal! Super exciting news. I also had my testosterone checked, its way low for my age. Unfortunately I have never checked it before now, but doctor says if the next draw in a week is low (and likely will be) we will start treatment. Im actually excited for that aswell, because I will feel better. Starting the week off on a couple good notes!
              So the doc is suggesting testostrone replacement, right away?
              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


              • #22
                Originally posted by Joe.shupe22 View Post
                Mine was 279. Also lack of focus, poor motivation, and my left testicle is considerably smaller than it hsed to be, and its tender to the touch and always aches...probably going to ask for an ultrasound of it to make sure theres no funny business happening
                The aching & tenderness may just be due to it working overtime trying to do the job of two. Pretty rare, but it seems to happen.

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

                Comment


                • #23
                  Hey Joe, funny how the numbers don't correspond so clearly to the result. I feel mostly normal. Definitely low on motivation and maybe some mood swings. I got grumpy yesterday and a bit terse with the wife. At the time, I was thinking, "Am I actually upset or is this a hormone thing?" and I really couldn't tell. But still no hot flashes and the remaining testicle seems ok. I hope the treatment makes you feel better!
                  11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                  12/8/16 Diagnosed with TC in left testicle.
                  12/9/16 Left I/O.
                  1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                  1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                  2/2/17 Pathology results: pN0. No current evidence of cancer. They say I still have a 10% relapse chance.

                  Comment


                  • #24
                    Mcintoda- Im going to have one more blood test done and if it comes back that low again yes, they will start me on replacement therapy right away.

                    Dave- I thought the same thing. I read on a few different sites that low T can also cause the pain to begin with.

                    Uno- Defintely interesting how numbers with each person affect them differently. I definitely do not feel like myself. Mine is a definite "this isnt me" type of feeling.

                    I will keep everyone posted as I move forward!
                    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                    Comment


                    • #25
                      JOE~Great news about scan and tumor markers!!! Please keep us updated. Hopefully, if they start you on T meds it will help you feel better.
                      17 year old son Grant dx 12/21/16
                      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                      pre/o CT Scan 12/22/16 normal
                      r/o 12/22/16
                      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                      BEP x 3 1/27/17
                      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


                      • #26
                        Oncologist appointment last thursday. He was very optimistic! Any enlarged lymph nodes are now on a decreasing trend (likely just reaction to surgery). He said he was very comfortable going 2 months between ct scans this time. Quite frankly I am too! Very excited about that.

                        Had a second testosterone draw this morning, it turned out at 340. Still feeling crappy. I will be getting in touch with my doctor tomorrow and hopefuly begin replacement therapy. I know it scares some but with the way I am feeling, I seriously could not be more excited.
                        11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                        Comment


                        • #27
                          Originally posted by Joe.shupe22 View Post
                          Oncologist appointment last thursday. He was very optimistic! Any enlarged lymph nodes are now on a decreasing trend (likely just reaction to surgery). He said he was very comfortable going 2 months between ct scans this time. Quite frankly I am too! Very excited about that.

                          Had a second testosterone draw this morning, it turned out at 340. Still feeling crappy. I will be getting in touch with my doctor tomorrow and hopefuly begin replacement therapy. I know it scares some but with the way I am feeling, I seriously could not be more excited.

                          Does your doc think that something from the RPLND has caused your remaining testicle to not function properly? I'm trying to understand the cause.

                          If you were post-chemo, I would say wait a bit before starting HRT. In such a case the body tends to recover on its own (particularly in those with 1 cycle). However, in your case, if there is no reversible cause of your low testosterone then I say go for it! If your body won't likely recover, then there's no point in waiting. I wouldn't be frightened of HRT. You'll feel like a million bucks compared to the way you do now.
                          Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                          7/1/2015: felt tiny lump on side of R testicle
                          7/30/2015: Ultrasound shows 2 intra-testicular masses.
                          7/31/2015: tumor markers normal, CXR clear
                          8/5/2015: R orchiectomy
                          8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                          8/14/2015: CT abdomen/pelvis clear, Stage 1b
                          8/24/2015: started 1 x BEP

                          Comment


                          • #28
                            I can't recall ever hearing of any RPLND causing low T. Joe, when did the symptoms start? Was it shortly after the I/O or after the RPLND? Looks like you had two months between them so did you notice the problems before the second surgery?

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

                            Comment


                            • #29
                              I honestly doubt that RPLND had anything to do with it. I had symptoms shortly after I/O but the doc told me it can take a bit for the other testicle to take over. In the next couple weeks my symptoms got only slightly better and then I feel like low mood, extremely high irritabiliy, low motivation, low energy all came back hard the week before rplnd. I just blamed it on possible stress over my upcoming rplnd but looking back I highly doubt it was. The first two weeks after rplnd I was having daily hot flashes too. At the time both my wife and I thought vasovagal, but I'm sure it was just another symptom from low T. Once I had pretty much healed from rplnd I had a dull ache in my left testicle that never went away, I asked about it but surgeon was not concerned. I didnt mention any mood issues though, as I hadnt "wised up" to my symptoms yet. Looking back now along with a bit of research, all of it points to low T.

                              -low mood (never "happy")
                              -heavy mood swings
                              -hot flashes
                              -irritability
                              -low motivation
                              -lack of focus
                              -fatigue

                              Those symptoms got me thinking about low T and then it has also dawned on me that I also....

                              -Hadnt had morning wood or random erections like I used to
                              -Erections quite disappointing lol
                              -almost zero sex drive
                              -Pain in my testicle after ejaculation (felt like "blue balls")

                              Thats when I called my doc and got my labs done. I just started androgel 1.62% three days ago (today will be my fourth dose). Im quite sure its already making a difference in my mood (which has been the worst part). Hopefully over the next few weeks I really start noticing a difference and I start feeling normal again!

                              Sorry for the lenghty post, but I figured I would throw my symptoms out there again incase angone else may be feeling the same way. I wish that it was standard practice to check testosterone before orchiectomy! I didnt even think about it
                              Last edited by Joe.shupe22; 03-04-17, 11:39 AM.
                              11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                              Comment


                              • #30
                                Interesting. I know Grant did not have his testosterone check before his r/o. Hope the Androgel helps with symptoms.
                                17 year old son Grant dx 12/21/16
                                pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                                pre/o CT Scan 12/22/16 normal
                                r/o 12/22/16
                                Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                                PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                                -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                                2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                                BEP x 3 1/27/17
                                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

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