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  • New to TC

    So I'm new here, unfortunately. I'll be 26 on Friday and living in Cleveland, OH. Here's a short explanation of my situation to date:

    3/1/17 - found lump on right testicle
    4/21/17 - went to ER with extreme pain and swelling
    4/22/17 - ultrasound revealed 4x3.7x2.5cm tumor in right testicle, "you have cancer"
    4/22/17- LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
    4/27/17 - right I/O
    5/2/17 - Non-seminomatous 70% Embryonal Carcinoma, 20% Yolk Sac, 10% Teratoma. LVI present.

    I had a second blood test today and I'm still waiting for the results. I'be been referred to a urological oncologist whom I meet with tomorrow to discuss everything and review options I'm assuming. My urological surgeon who did the I/O told me I'm stage 1S but from what I've read, that determination can't be made without the results of the post op blood test. Is it possible I could be 1B if my levels return to normal? Should I be getting a post op CT scan to check for nodes again and rule out stage 2?

    My tumor was considered T2 on the path report, but LVI was present. I've gathered that this means I have about a 50% chance of reoccurrence if I do nothing. I may be getting ahead of myself but I'm concerned about the choice between RPLND and chemo vs surveillance. My doctors tell me laparoscopic RPLND is not yet widely used and the open RPLND seems pretty invasive. I should also mention they initially saw a small 1x1x1 cm lesion on my right kidney on the pre op CT scan, but a subsequent ultrasound could not see anything. Should I get another CT scan or MRI to be sure? Docs don't seem to be too concerned.

    I plan to discuss everything with the oncologist tomorrow and get his opinion but I also think having a second or third opinion will be a good idea. People around here have been talking about Dr. Einhorn at IU - is it worth emailing him for an opinion and if so, when is appropriate?
    26 Cleveland, OH
    3/01/17 - Found lump on right testicle
    4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
    4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
    4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
    5/16/17 - Markers normalize, CT clear. Stage 1B
    5/22/17 - Start 1xBEP

  • #2
    I think that while Dr E is an invaluable resource, we should try to only ask for help on difficult cases. Your case seems pretty straightforward at this point. Dr E would likely recommend surveillance, knowing that any recurrence would be knocked down by 3x BEP. Some folks are not comfortable with that approach & prefer to take chemo to reduce the chance of recurrence It is an individual choice you will have to decide on for yourself. I personally, would not take any treatment that wasn't absolutely needed to save my life, but some others feel differently.
    .
    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      Sorry to welcome you to the board no one wants to be a part of. I most people have a CT done after the orchy. I had one done post OP of the abdomen and chest. There was some suspicious looking nodes around my lungs which can occur in these cases. I'd definitely ask for another scan but, you should wait a few weeks to see where your tumor markers go. Is your oncologist and urologist part of the same hospital? See if you can have them communicate with each other regarding the pathology and scans. Get their thoughts and then make a decision. Waiting is the toughest part.

      Good Luck,
      Daniel

      Comment


      • #4
        Thanks for the advice guys. Here are the latest blood results:

        LDH 192, AFP 23.9, HCG 2

        The urologist and urology oncologist have been speaking and they are within the same hospital system with access to all my records. I plan to speak with the urology oncologist again tomorrow about these results, which are trending in the right direction. Still have weekly blood tests and a chest CT scheduled for the 15th.

        I've been going back and forth on the possibility of adjuvant chemo vs RPLND, assuming these levels return to normal. Considering I had LVI, I'm not sure I like the odds of reoccurance and needing 3xBEP. Any thoughts?
        26 Cleveland, OH
        3/01/17 - Found lump on right testicle
        4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
        4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
        4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
        5/16/17 - Markers normalize, CT clear. Stage 1B
        5/22/17 - Start 1xBEP

        Comment


        • #5
          That 1 x 1 x 1 cm lesion by the kidney is technically normal, but right at the borderline. I would be concerned that doing 1 x BEP would not be enough if that lymph node is in fact malignant. Surveillance and open RPLND are both perfectly fine options if your markers come down to normal.
          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
            The lesion is actually in my kidney, not a node. The urologist wants to follow up on that with another CT scan or MRI at some point but doesn't think it's metastasis from my TC. Could be harmless.

            @RJKD I see you ended up being 1B and did 1xBEP. Just curious how/why did you make that decision versus surveillance or RPLND?
            26 Cleveland, OH
            3/01/17 - Found lump on right testicle
            4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
            4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
            4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
            5/16/17 - Markers normalize, CT clear. Stage 1B
            5/22/17 - Start 1xBEP

            Comment


            • #7
              Then 1 x BEP would be an option for you. I personally knew that surveillance was not the best thing for me. With a 50% relapse risk, that was too high for me. I knew if I relapsed, 3 x BEP would be a very punishing treatment. After having gone through 1 x BEP, I can say for sure that I am correct with that initial hypothesis. 1 x BEP was quite hard in and of itself! I have several friends who have done 1 x BEP and they have been quite surprised and taken aback at how hard it was. We just didn't expect it. I expected it to be much easier.

              I basically had a tough time deciding between 1 x BEP and RPLND. I didn't have trust in the surgeon available at the time for my RPLND. I did not see the lap-RPLND as an option. I considered robotic, but ultimately decided that the surgeon offering it was not an expert in the procedure. One important factor in my decision was that 1 x BEP had a significantly lower relapse rate. Also, EC has a reputation of being unpredictable in it's path of spread. Having said that though, 90% of the time it first spreads to the retroperiteonum. One other thing that I did not like about the RPLND...if a few lymph nodes were found to be positive, then I would be faced with a decision of surveillance or 2 x BEP. I hated that aspect. I could've done 1 x BEP right from the beginning but then after a major surgery I could be faced with a decision for a HIGHER amount of chemotherapy. That unsettled me.

              Having said all that, if I had done things again, I would do a full open bilateral RPLND, because I hated every minute of 1 x BEP and the intense chemo-brain it caused for me. Sure the surgery sucks, but every day after the surgery gets better. You have a good chance of avoiding chemo if you do the surgery too. Chemo was a very difficult experience for me. However, I do not regret not doing surveillance though.
              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


              • #8
                Originally posted by RJKD View Post
                Then 1 x BEP would be an option for you. I personally knew that surveillance was not the best thing for me. With a 50% relapse risk, that was too high for me. I knew if I relapsed, 3 x BEP would be a very punishing treatment. After having gone through 1 x BEP, I can say for sure that I am correct with that initial hypothesis. 1 x BEP was quite hard in and of itself! I have several friends who have done 1 x BEP and they have been quite surprised and taken aback at how hard it was. We just didn't expect it. I expected it to be much easier.

                I basically had a tough time deciding between 1 x BEP and RPLND. I didn't have trust in the surgeon available at the time for my RPLND. I did not see the lap-RPLND as an option. I considered robotic, but ultimately decided that the surgeon offering it was not an expert in the procedure. One important factor in my decision was that 1 x BEP had a significantly lower relapse rate. Also, EC has a reputation of being unpredictable in it's path of spread. Having said that though, 90% of the time it first spreads to the retroperiteonum. One other thing that I did not like about the RPLND...if a few lymph nodes were found to be positive, then I would be faced with a decision of surveillance or 2 x BEP. I hated that aspect. I could've done 1 x BEP right from the beginning but then after a major surgery I could be faced with a decision for a HIGHER amount of chemotherapy. That unsettled me.

                Having said all that, if I had done things again, I would do a full open bilateral RPLND, because I hated every minute of 1 x BEP and the intense chemo-brain it caused for me. Sure the surgery sucks, but every day after the surgery gets better. You have a good chance of avoiding chemo if you do the surgery too. Chemo was a very difficult experience for me. However, I do not regret not doing surveillance though.

                First time i've read about your BEP experience in detail (I know that you advise RPLND over BEP where applicable), sorry to hear it was tough for you. I have to add though, it really does differ from person to person.

                I've heard cases like what RJKD is describing where 1 cycle can be tough, but i've also heard cases where people wonder what the big deal was. I was in the later, my first cycle was to be honest, relatively easy. The first week was the toughest as I was sick a bit and just groggy, but the following two weeks felt almost normal. But the third cycle was quite tough on my body.

                I personally would advise 1xBEP over RPLND if that is an option, but again that is due to my personal experience so may be tinted. But only you can make the decision if that is what it comes to. Do as much research as you can, and look at your own lifestyle.
                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


                • #9
                  Yes, it definitely varies so much. I had chemo brain for at least 6 months, which made my job (doctor) very difficult. I couldn't remember basic drug names, I couldn't remember what patients told me. My buddy did 1 x BEP and he had zero chemo brain. Nothing at all. Another friend of mine did 1 x BEP and he had tinnitus come and go for a couple of months. It's so unpredictable. The one thing in common was that we all temporarily lost our head hair .
                  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


                  • #10
                    Actually tinnitus is a good point, that was worse in my first cycle strangely enough, was quite annoying. And yh my hair is growing back.. very slowly.
                    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


                    • #11
                      I should point out though, I did not notice my chemo brain until the entire cycle was over. I think a lot of people associate it as something that starts during chemo. Mine did not. I started feeling it after the 3 weeks. And it seemed to almost increase for a few weeks. Then it slowly (very slowly) subsided.
                      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


                      • #12
                        Originally posted by RJKD View Post
                        I should point out though, I did not notice my chemo brain until the entire cycle was over. I think a lot of people associate it as something that starts during chemo. Mine did not. I started feeling it after the 3 weeks. And it seemed to almost increase for a few weeks. Then it slowly (very slowly) subsided.
                        That seems odd to me. Most folks have chemo brain during chemo & it starts improving shortly after chemo is done, I know mine did. We are all different & will react to treatments in different ways I guess.

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

                        Comment


                        • #13
                          Originally posted by Davepet View Post

                          That seems odd to me. Most folks have chemo brain during chemo & it starts improving shortly after chemo is done, I know mine did. We are all different & will react to treatments in different ways I guess.

                          Dave

                          Well, remember the cycle is very short. I also was not working during the cycle. When I returned to work it was apparent that my brain wasn't working. It's quite possible that it wasn't working even during chemo too, but the demands on my mind were just not there and my focus was getting through treatment. However, it did seem to worsen for a few weeks after chemo. Also chemo brain can last several months to even years. I have a few patients where that has happened.
                          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
                            I'm not saying it can;t happen, it just wasn't my experience, nor have very many on this board mentioned the problem much after chemo ended, that i can recall.While it does happen, it just does not to seem to be a common problem, from what has been reported in here. I have little knowledge beyond what the forum members say here, so my knowledge is limited.

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

                            Comment


                            • #15
                              Well, I met with Dr. Tim Gilligan at the Cleveland Clinic today for a second opinion regarding chemo. I just received my post-op CT scans and blood markers which show an all-clear, confirming stage 1B. After talking with the Dr. And weighing all the pros-cons I decided to proceed with 1xBEP starting Monday. To me it was a hard choice but I'm at peace with it and felt it represented the lowest probability of relapse and needing RPLND or 3xBEP later on in my situation.

                              Dr. Gilligan cited this study as evidence that 1xBEP is sufficient for high risk clinical stage 1 NSGCT, and Dr. Einhorn also agreed that 1 was much preferred over 2. http://meetinglibrary.asco.org/content/177687-197

                              Looking forward to killing this thing. Apparently they don't like to do chemo through an IV even for 1 round, so I'll have a port placed tomorrow and chemo class on Friday. Here we go!
                              26 Cleveland, OH
                              3/01/17 - Found lump on right testicle
                              4/21/17 - Went to ER. 4x3.7x2.5 cm tumor in right testicle
                              4/22/17- Pre/op LDH 194, AFP 41, HCG 46, CT scan clear, X-ray clear
                              4/27/17 - Right I/O. Non-seminoma with LVI. 70% EC, 20% Yolk Sac, 10% Teratoma
                              5/16/17 - Markers normalize, CT clear. Stage 1B
                              5/22/17 - Start 1xBEP

                              Comment

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