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New user here Daniel_Eye from the Greater Boston Area

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  • #16
    Originally posted by Daniel_Eye View Post


    Hi Joe

    Been pretty depressed lately, went in for some blood work and a CT scan last week. My AFP went down from 4.8 to 3.9 but my LDH went up from 243 to 280. Waiting on the bHCG test to come in. Also did some fertility testing, My FSH is 12.9 and ANA is 10.5, just waiting for my testosterone test to come in.

    Spoke to the surgeon on friday, he said that he thinks there is a slight enlargement in the original node and possible two more that are now slightly over 1mm. He says that hes about 90% sure that I'll have to do chemo first and that should take care of it. That got me really bummed out on friday and I've just been kinda dreary, I was hoping to just do the RPLND and be done. It doesn't help that it was bitter cold the past couple days.

    I have an appointment this thursday with the fertility Dr and the Oncologist. I should make my decision on friday and move along with treatment (whatever it will be) the following week.

    How about you, how have you been tolerating the surgery. Are you able to walk around and function better? How about B.M's and urination, did it mess with that at all?

    It's normal to feel these feelings. Don't be hard on yourself. We're here for you

    There's nothing in your story that tells me you need chemo first. Let's wait for the bHCG to come in though. By the way, that slight LDH rise means nothing. It's normal.

    I guess you mean that two more lymph nodes are slightly more than 1 "cm", not "mm". Even if that's the case, you can still proceed with RPLND, but the chances of requiring 2 x BEP after will be higher than before.
    Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

    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


    • #17
      Thanks RJKD

      Appreciate the kind words. I figured that if the disease is active and something is still growing and moving then I'd need to get the chemotherapy especially if I was placed in a higher stage. But if the disease isn't active wouldn't it be better of just having the surgery? The rub is that how can I tell if it is active or not? One blood level rises and the other falls, I know LDH is the least important but if it is going up does it mean that the disease is active or that my body is still recovering from the loss of a testicle?

      I'm also wondering if testosterone levels influence this since losing a testicle means lowered T, could that cause a fluctuation in LDH levels?

      And yes I meant cm not mm...if only it were mm.

      Comment


      • #18
        Yh as RJKD said I don't think that LDH rise means anything at all.
        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


        • #19
          Originally posted by Daniel_Eye View Post
          Thanks RJKD

          Appreciate the kind words. I figured that if the disease is active and something is still growing and moving then I'd need to get the chemotherapy especially if I was placed in a higher stage. But if the disease isn't active wouldn't it be better of just having the surgery? The rub is that how can I tell if it is active or not? One blood level rises and the other falls, I know LDH is the least important but if it is going up does it mean that the disease is active or that my body is still recovering from the loss of a testicle?

          I'm also wondering if testosterone levels influence this since losing a testicle means lowered T, could that cause a fluctuation in LDH levels?

          And yes I meant cm not mm...if only it were mm.
          Hey Daniel. The disease is active. We're just hoping that it's only active in the lymph nodes and not elsewhere. If you have an elevation of tumor markers (particularly beta-HCG, not LDH) then chemo is the correct route. That rise in LDH means nothing to me. It could simply be the normal variation of the level in your body. These are not static things. It could simply be due to hemolysis. It could be due to stress. It could be that you were more physically active that day. If it was 600 I'd be more concerned. Testosterone doesn't particularly affect LDH. Most likely the other things I mentioned.
          Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

          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


          • #20
            Just to add to the LDH topic, my oncologist informed me that LDH is only a useful marker in testicular cancer when there is widespread or bulky disease. It seems not to be in your case so I highly doubt the LDH means anything. For instance, mine was normal before my I/O, then elevated for a while after before it's begun trending downward again.
            11/16/16 - Something feels off,maybe I have a hernia
            11/23/16 - "You may have cancer"
            12/13/16 - "You most likely have cancer"
            12/21/16 - Left I/O followed by "You definitely have cancer"; 100% classic seminoma, multifocal with tumors at 2cm, 1.2cm, and 4mm, no vascular invasion, no LVI, and no spermatic cord invasion
            12/28/16 - CT scans reveals one suspicious para-aortic lymph node measuring 1.2cm; staged at seminoma IIa
            1/3/17 - Radiation therapy recommended as treatment from hospital tumor board
            1/23/17 - Started RT for 19 sessions
            2/16/17 - All done with radiation

            Comment


            • #21
              My LDH has always been around the 400 mark, before chemo, after chemo. My oncologist wasn't bothered in the slightest. They see anything under 800 as normal, but that's in the UK for my hospital so it might vary around the world. Mine went up by 100 for example a few days after the end of my chemo, then a few days later it dropped back down a 100. They said it can happen as your body has taken a lot and it is repairing itself.

              Similarly for you maybe your I/O has done a similar thing.
              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


              • #22
                When my 17 year old was dx on Dec. 21. 2016 his LDH was 1,119, and even after r/o it was elevated and increased. But they stopped drawing for that tumor marker once the decision was made to start BEP x3. As others have said it AFP and HCG that are the more important markers for TC. Hang in there.
                17 year old 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: pathlogy Teratoma , 3 large masses removed

                Comment


                • #23
                  I had 2 lymph nodes come back containing cancer after rplnd. One was 1.8 cm, the other was 1.4cm. So don't rule out rplnd just yet. I have chosen surveillance even with the cancerous nodes. About a 15% chance for relapse. What I like about primary rplnd is it can be very curative alone. As far as how I am feeling? The surgical recovery is pretty well finished up. I had no issues with bowel movements, urination or even ejacuation, however my surgery was done robotically so recovery is much easier. If your markers come back all normal, rplnd would absolutely still be an option for you even with your suspicious nodes. Pn1 disease (5 or less nodes no greater than 2 cm) can be followed by surveillance with a pretty good chance of avoiding further treatment. Pn2 in my opinion should be followed by adjuvant chemo. But no matter what you choose, remember that the odds are definitely in your favor of a complete cure. I think everyone on the forum experiences the ups and downs of having cancer. I certainly have, and still do. So know that we're all here for you. You got this man! Keep your chin up!
                  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!

                  Comment


                  • #24
                    Originally posted by Daniel_Eye View Post
                    Spoke to the surgeon on friday, he said that he thinks there is a slight enlargement in the original node and possible two more that are now slightly over 1mm. He says that hes about 90% sure that I'll have to do chemo first and that should take care of it. That got me really bummed out on friday and I've just been kinda dreary, I was hoping to just do the RPLND and be done. It doesn't help that it was bitter cold the past couple days.
                    Honestly, with several >1CM nodes, I would personally lean towards chemo. In my opinion, that is the best chance for the least amount of treatment. Others will disagree, I'm sure. I also see no reason why you couldn't proceed with an RPLND at this point ( I would only do open,especially with new nodes showing up on CT) and let the results determine if chemo is needed afterwards.It's a bit of a crap shoot, but the upside is, no matter what you choose, you will be cured. It's just a matter of how much treatment it takes to get there.

                    Dave

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

                    Comment


                    • #25
                      HI friends

                      Thanks for the feedback. The whole reason for wanting the RPLND is to try and avoid chemotherapy completely I'm not so sure if that is the case now (with the possible new enlargement).

                      I want to cut down the length of therapy I will need and I figured that going the surgical route might be the best route because of less long term side effects. But, if I have to do surgery then go through that recovery period and then go in for 1-2 cycles of chemo and then deal with that recovery I'm wondering if its worth doing the surgery. But then what if I need surgery after primary chemo and then things are more complicated....

                      That is the question floating through my mind. Thursday, when I meet with the oncologist, I'm going to make my concern clear to her and also get a clear answer on my CT scan. I never got a report from the radiologist, only a verbal reading from the surgeon and the disc with the scan but no report.

                      Comment


                      • #26
                        Originally posted by Daniel_Eye View Post
                        HI friends

                        Thanks for the feedback. The whole reason for wanting the RPLND is to try and avoid chemotherapy completely I'm not so sure if that is the case now (with the possible new enlargement).

                        I want to cut down the length of therapy I will need and I figured that going the surgical route might be the best route because of less long term side effects. But, if I have to do surgery then go through that recovery period and then go in for 1-2 cycles of chemo and then deal with that recovery I'm wondering if its worth doing the surgery. But then what if I need surgery after primary chemo and then things are more complicated....

                        That is the question floating through my mind. Thursday, when I meet with the oncologist, I'm going to make my concern clear to her and also get a clear answer on my CT scan. I never got a report from the radiologist, only a verbal reading from the surgeon and the disc with the scan but no report.

                        I wouldn't look at the RPLND only as a way to avoid chemotherapy. It can also be a way to minimize the AMOUNT of chemotherapy.

                        We simply don't know what's in your lymph nodes until you have an RPLND. You won't get away with 1 x BEP after RPLND though. It would either be surveillance or 2 x BEP. You also will likely be able to omit the bleomycin and do 2 x EP. That's HALF the chemotherapy that you would do compared to if you did chemo first. If by chance you are pN3, then 3 x BEP. My estimate is that you are either pN1 or pN2.

                        Remember, if you have an RPLND and then 2 x EP, that is superior to 3 x BEP or 4 x EP on it's own. This is for a few reasons. One, the third cycle (and 4th in the case of 4 x EP) is easily the most difficult and the one that causes the most side effects. Two, you will have largely eliminated the possibility of a teratoma relapse in the retroperitoneum. Three, you have a relatively high chance of needing an RPLND after 3 x BEP. Sloan Kettering would certainly do one. It's always better to do the RPLND before chemo if given the chance.

                        So, I would do the RPLND, pray that they find less cancer than originally thought. It's possible you have less disease than what is showing on the CT scans. The odds are in your favor that you can decrease the amount of chemotherapy by about half if you do the RPLND first.
                        Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                        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


                        • #27
                          I also wouldn't just think of RPLND as a way to avoid chemo. Remember that even if you're found to be pN2, you still have almost a 3/4 chance of being cured by the RPLND. So, you can choose to do chemo there, (2xEp or 2xBEP), but the RPLND is a reasonable attempt at a cure (even in pN2, and certainly in pN1). Also remember that after chemo, you'd still have around a 20% chance of having to do an RPLND anyway. I'd rather do an RPLND with <30% chance of having to do chemo than do chemo with a 20% chance of having to do an RPLND. That's my take. So I think of the RPLND as a good attempt at a cure, not just a way to stave off chemo.
                          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


                          • #28
                            Just got my bHCG test back and it dropped from 4.8 to 2.0. That is a pretty hefty drop, My AFP is also down from 4.8 to 3.9. But my LDH is up from 243 to 280. Things are starting to sound good. Now just waiting on my T level.

                            Comment


                            • #29
                              Best of luck with everything. I have just been through the same situation. We are all here for you. You will get through this!

                              Comment


                              • #30
                                Hey Daniel,

                                Just wanted to check in here too and say hello, looks like you've had some tests and different options since your initial post. I'm doing 3xBEP right now, and just started my third cycle on Monday.

                                I can safely tell you that the first 2 BEP rounds were not TOO bad. The weekends after each first week were the worst, riddled with nausea and exhaustion. The best thing I can suggest is to keep up on the medications that they give you--don't be shy to take the nausea meds, even if you're not in the major throes of nausea just yet.

                                I'll be able to report further on the third cycle once I get further into it. I read RJKD's post above about the 3rd being the worst, so now I'm a little nervous about it too haha...but too late to turn back now.

                                Hope all is well and feel free to reach out if you have any questions about anything!

                                Joey
                                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)

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