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Blindsided by Damn TC- an Intro

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  • Blindsided by Damn TC- an Intro

    Hi everyone,

    Been lurking on here since November now and just wanted to finally contribute. I'm starting chemo in about a week and am not looking forward to it but really want to be able to put this past me and move one. Testicular cancer really caught me off guard. I'm a pretty healthy guy, no cancer in the family and for the past year felt like I was reaching the best shape I've been in since high school. Everything was going good, planning for my wedding that's coming up this year and around September 2016 I started to feel a small lump on my left during self examination. Didn't think much of it at first, didn't hurt so ehh, just kept going about as usual. Had my annual physical in November, doctor doesn't feel anything but schedules an ultrasound anyway. Get the US done and boom, it's a tumor. Had the little guy removed the next day. When I was 8, I almost drowned in a pool. You can't do much but try to gasp for air but there's nothing supporting you under so everything slows down and you don't know what's going to happen next. Everything slows down and you can't do anything. That's what this felt like. Those two days from getting the US to the I/O felt like the longest days ever. Everything else was happening so fast around me but my life seemed to slow down and despite this, I still felt like I had no time to think or process what was going on. Every appointment, procedure, test that I've had has felt like I'm just accompanying someone else that all this is happening to. I still don't feel like it's happened. After the I/O and first CT scan, turns out that the TC was limited to the testicle. Here I was thinking thing were looking up, that I would just have to do surveillance. Then I find out it was 100% embryonal. After meeting with an oncologist and doing my own research, I decided that my best chances to get this over with is the adjuvant chemo 2x BEP. I think the reality is finally starting to set in and this forum has helped tremendously. Reading others experiences has helped me learn, prepared me for my next steps, and I've had some great laughs. Thanks to you all for making this journey a bit easier, and for shedding light on the many questions I've had to this point without me even having to ask. I'm truly thankful for all of you sharing your experiences with TC.

  • #2
    Hi Joveloa, you described very well what most of us are feeling during the TC saga. things slow down and everything takes forever. For me December took forever and now January is just dragging on. TC got most of us off guard. You always feel that cancer happens to other people and here it is happening to you... You case sounds better than most. Hang in there. If you never had health issues than hopefully chemo will be OK for you. Agree with you that this forum is so helpful. Keep us posted and good luck.

    Comment


    • #3
      You seem to have caught it early which is good. I'd question the 2xBEP compared to 1xBEP. Depends on your LVI (vascular invasion) partly. Others on here will be able to give more advise on that.

      Either way I'm halfway through my 2nd cycle of 3 now, and to be fair so far it's gone quite quickly so hopefully it does for you as well.
      24 year old diagnosed 6/11/16
      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
      Pre/o CT Clear
      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
      Post-op CT with one enlarged lymph node - 1.5x1cm
      Borderline stage 2B/3B
      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
      CT and markers clear - in remission - 28/2/16

      Comment


      • #4
        I'm new here, my 17 year old was dx in Dec. Looking forward to your updates.
        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


        • #5
          I would recommend 1 x BEP over 2 x BEP regardless of if you have LVI or not. So would EInhorn, Nichols, Vaughn and pretty much any TC expert.
          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


          • #6
            Thanks everyone, I will ask about the 1x BEP.

            Comment


            • #7
              You summed it up perfectly--everything really does slow down and it's a crazy ride. It felt so weird that I was going to work and still doing everything else on my normal routine but in the background was another doctors appointment or another test or another scan or another surgery. It'll feel the same with chemo--everything does seem to become focused around the treatment and getting through it. At least that's what I'm finding so far.

              Hang in there. We will get through this!
              11/15/2016 - Ultrasound detects mass in left testicle
              11/23/2016 - Left I/O
              12/8/2016 - CT Scan indicates 2 enlarged lymph nodes, staged IIB
              12/21/2016 - Meet with medical oncologist, scheduled 3xBEP
              1/9/2017 - Began 3xBEP
              3/20/3017 - Finished 3xBEP (phew)

              Comment


              • #8
                Hi Joveloa,
                Not much / anything to add, other than good wishes/thoughts.

                Just for your info (which is why I replied) - your first post (14th January) happens to be the anniversary of my first I/O eight (8) years ago. So although everything is an intense blur at the moment, thankfully most of us come through this and live normal lives beyond TC. I am sure you will as well.

                Take care, DZ

                Jan 2009: RHS (Seminoma) & RT
                Mar 2010: LHS (Embryonal Carcinoma)
                Sep 2010: Relapse & 3 x BEP
                Mar 2015: Five years "nut free"
                http://doublezeroami.blogspot.com

                Comment


                • #9
                  joejoey, that's very true. It's like a double life that few people know about. And thanks DZ, it's encouraging to hear that. I'll admit that it's been a roller coaster but I think I've been mostly positive throughout this journey so far. The few people I've told are surprised and say that I've taken it so well. But that's probably just because it's happened so quick to process haha. It helps to know now that this is a highly curable cancer.

                  Comment


                  • #10
                    Any update on your tx plan? That is what my 17 year old son has focused on "highly curable cancer". And you said it "roller coaster"!!
                    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


                    • #11
                      Hi Trekga, I emailed Einhorn and he suggested 1x BEP if I chose chemo since I had no lvi and I'm at 30% risk for relapse. He also said he favored surveillance but I'd rather be sure I don't come up with any surprises down the road. I'm meeting with my onc on Monday and will bring up the 1x BEP.

                      Comment


                      • #12
                        Originally posted by Joveloa View Post
                        Hi Trekga, I emailed Einhorn and he suggested 1x BEP if I chose chemo since I had no lvi and I'm at 30% risk for relapse. He also said he favored surveillance but I'd rather be sure I don't come up with any surprises down the road. I'm meeting with my onc on Monday and will bring up the 1x BEP.

                        If you were going to have treatment, then at 30% i'd definently only do 1xBEP rather than 2, so try to be respectfully insistant on it, but also understand why your onc wants to do 2.
                        24 year old diagnosed 6/11/16
                        Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                        Pre/o CT Clear
                        Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                        Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                        Post-op CT with one enlarged lymph node - 1.5x1cm
                        Borderline stage 2B/3B
                        BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                        CT and markers clear - in remission - 28/2/16

                        Comment


                        • #13
                          I would do RPLND in this situation.
                          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


                          • #14
                            Originally posted by Nish115 View Post


                            If you were going to have treatment, then at 30% i'd definently only do 1xBEP rather than 2, so try to be respectfully insistant on it, but also understand why your onc wants to do 2.

                            I have no idea why the onc wants to do 2. I would consider it completely illogical without LVI present.
                            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


                            • #15
                              Hi everyone! Sorry I did not post an update sooner but good news is that I discussed the new guidelines that came out with my onc and he gave his blessing for 1XBEP since the scans and blook work was normal. RJKD, i thought about the rplnd but wanted to avoid another surgery if possible. Also my insurance covers chemo 100% but not surgeries. I finished my long week last and had my bleo push yesterday. Overall no major side effects, except for little sleep and some constipation the first week probably due to the steroids. Slight ringing in ears over the weekend but definitely feeling more "normal" this week. Last week was all a blur mostly. Hope everyone is doing well!

                              Comment

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