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  • Looking for some help, advice, and encouragement

    First of all, I would honestly like to wish everyone here the Happiest of Holiday’s possible. To be on a forum as this is a double edged sword- obviously we have all experienced something before and/or are experiencing something now. But this place is also wonderful as, throughout my lurking over the past two years, I see how much a tremendous support you all can be in the face of fear.

    Here is my situation:

    Hello, my name is Josh and I am 31 years old. I am here because I am scared and seeking some sort of encouragement.
    So, two years ago in November, my righty was taken out and the patholigical of it was seminoma. CT scans afterward found no trace of it left within me, so I entered active surveillance. Over the course of the past two years, with a combination of CT or X-rays every 4 months combined blood work, everything had been fine.

    I had a chest X-ray done in August of this year and it was fine, and most recently at the beginning of this month, I had a CT abdominal and it was fine. The blood work done this time around (very end of November or early December) indicated an hCG of 7, AFP of 2.0, and an LDH of 325. My urologist is suspicious something is going on, so immediately had me see an oncologist which I finally saw last Tuesday.

    His first measure was to retest my blood just to make sure (I can see the results in an online patient portal are still 325 on the LDH, the AFP rose slightly to 2.4, and hCG is not posted yet). We did an ultrasound of my lefty, which it is fine (I don’t know, I was kind of hoping it would be that).

    So next he ordered a PET from my skull to thigh if my insurance will approve. He tried to reassure me that based off of what I had, he believes it is seminoma again, and that if scans next week show nothing, it’s chemo, and if they find something, radiation is a focus treatment, and that seminoma is highly treatable no matter the size and location. He also tried to indicate to me that although the numbers are elevated, they are still small in the grand scheme of things and that what ever is going on is also small and young and the point of surveillance was to be ahead of it, like he says we are.

    So for my symptoms, I basically have none. Now I obviously relate any oddity or weakness or pain to cancer, but I know that the mind plays terrible tricks as well. The only REAL symptom I feel is I have a slight cough and had it since like mid November, and it’s not all the time, and I know a lot of people get coughs when it gets cooler outside. Keep in mind I run a lot (I did close to 80 miles in November). I haven’t been running much LATELY due to the recent news, but it’s because my motivation has been zapped, not because I am physically incapable. I keep telling myself that if I am able to be is active as I am, I cannot be deathly and advancely sick, right?

    Now of course I’m worried I have like a random lung cancer (not related to TC) due to my subtle cough or it is in my brain since my most recent CT abdominal a couple of weeks ago showed nothing.

    If you read all of this, thank you. I am just very afraid and looking for motivation and some light. I kind of do not have much family, I live on my own, a relationship of two years ended weeks prior to this due to my job keeping me gone and my introverted lifestyle, and I have a ton riding on this financially- I just lost a fully paid car in a flood two months ago so I have a new expense in the form of a replacement, my job rides on this (I’m a pilot and I cannot fly if I undergo treatment, and I’m afraid I’ll never fly again). I just feel very lonely and like I’m getting kicked in the teeth.

    The doc grabbed me by the shoulder the other day when I was crying and told me, “You’re going to beat this.” He said overall I’m a healthy young guy and should be able to handle any treatment. He admitted it wouldn’t be fun, but he told me I’ll get this in the long run and move on with my life and continue to fly (which is what I love).

    Unfortunately, I researched a lot about testicular cancers and other cancers over the last two years. The surveillance lifestyle has taken a tole on me as it might anyone. I know technically how beatable seminoma and even other GCTs are if that were the case, but that doesn’t make it any less formidable, especially when you live alone and see things kind of half empty sometimes. I am reaching out to you warriors out there that have handled this like champs and know and understand. My last days have been dark. Please help me.

    My serum markers when I had my righty in 2015 were: LDH (320), AFP (2.3), and hCG (11).
    Last edited by aerobadger; 12-26-17, 04:59 PM.
    11.09.15: Mass found in right testicle
    11.13.15: Right I/O
    Late Nov. 2015: Stage I seminoma: Active surveillance
    12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
    Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
    January 2018: Port installed, 3xBEP started
    March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
    May 2018: First post-chemo imaging planned

    http://www.instagram.com/joshrunsaway

  • #2
    Hi Josh!

    Merry Christmas and sorry that you're dealing with this. The HCG of 7 is worrisome, and indicative of a potential recurrence. I wouldn't worry about the AFP or LDH. A huge PET scan like that isn't necessary, as PET scans are NOT reliable for TC due to a very high rate of false positives. Just go with regular CT scans. Less expensive, less radiation, and more reliable. Potentially false information off of a PET scan is very dangerous except in the hands of a known TC expert. I would have the HCG retested in a few weeks, and if it's still elevated or higher that indicates a recurrence.

    Elevated markers with nothing on CT scans would put you at Stage IS, for which BEPx3 chemotherapy would be the standard course of treatment. Yes, radiation might be an option as well, but not if there's nothing showing up on CT scans.

    Lastly, God bless him that you can email Dr Einhorn about this and ask what he thinks you should do: leinhorn@iu.edu

    I know how rough surveillance is and how there's never a good time to be dealing with this, so I feel your pain there. You're going to be FINE either way, it's just a question of what you might have to go through, but sorry to be reading about a potential recurrence during the holidays.
    Young Adult Cancer Survivorship by Steve Pake
    April is Testicular Cancer Awareness Month!
    www.stevepake.com
    Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
    My Survivorship Thread | All of my Blogs
    C
    ONTACT ME ANYTIME!

    Comment


    • #3
      Steve is right, I wouln't be concerned about the LDH is an indicator of inflamation, not necessarily cancer.Your AFP is well below the action level of 25.

      Here's what the testicular CAncer Resource center dictionary has to say about hcg:
      Human Chorionic Gonadotropin (hCG), beta subunit - In adults, significant elevation of levels of beta HCG occurs only during pregnancy and in patients with trophoblastic neoplasms or nonseminomatous germ cell tumors. As a result, it is used as a tumor marker. Essentially, 100 per cent of patients with trophoblastic tumors and 40-60 per cent of patients with nonseminomatous germ cell tumors, including all patients with choriocarcinoma, 80% of patients with embryonal carcinoma, and 10-25% of patients with pure seminoma are diagnosed with elevated levels of beta HCG. The serum half life of beta hCG is 24 to 36 hours, which implies that elevated concentrations should return to normal within 5 to 7.5 days after surgery if all tumor is removed. Please note that the normal HCG level is usually less than 5 miu/ml. Also note that the HCG level can become elevated (falsely positive) due to abnormally low levels of testosterone or because of marijuana use.
      At 7, you are only 2 points above the allowable level. A re-test is in order, and if you use marijuana stop for a couple of weeks before the test. Also a test of testostrone levels should be done to rule low T out.

      What have your levels of all three markers been running during surveillance?

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

      Comment


      • #4
        I do not use marijuana nor am I around it.

        I need to get a copy of my trends, but the only one I vaguely remember was the LDH and it was like in the 170’s.

        I did email Dr. Einhorn the other night and his response about the hCG was-

        “...2 . A minimally elevated hCG is often of no clinical concern. If you use marijuana that can cause a slight elevation of hCG. Also, a minor elevation can simply be a lab error and I would not be surprised if the repeat hCG that was drawn is now normal
        3 . If you really do have recurrent seminoma over 2 years after your original diagnosis, the ONLY place it could be would be lymph node in pelvic, abdominal, or the area between the lungs (mediastinal nodes) . If so that would easily be curable and chemo is not always necessary to achieve that goal....”

        So am I understanding correctly the that in my scenario and three most recent values, the one of most significance is hCG and only because it is a mere two points higher than the normal level?

        And if there is indeed something going on, is it right to tell myself that the smaller the numbers are so far lessen the advancement of what ever may be happening?

        Thank you all for the input so far.
        Last edited by aerobadger; 12-26-17, 05:01 PM.
        11.09.15: Mass found in right testicle
        11.13.15: Right I/O
        Late Nov. 2015: Stage I seminoma: Active surveillance
        12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
        Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
        January 2018: Port installed, 3xBEP started
        March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
        May 2018: First post-chemo imaging planned

        http://www.instagram.com/joshrunsaway

        Comment


        • #5
          As a few have mentioned, including Dr. E, that HCG is still pretty low, it would need to continue to become elevated to be a factor. I would definitely have your tumor markers redrawn at least once or twice.
          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.
          Grant is enjoying his senior year in High School Cancer Free!

          Comment


          • #6
            Hey man, I'm sorry to hear it's rough you on you... That's the trouble with it all - it plays on your mind and the unknown makes you doubt yourself and second guess yourself too. Hopefully, you find out exactly what's happening soon so you can start to deal with whatever is happening!
            July 2016 - Left I/O
            December 2016 - BEPx3
            All clear for 1 year!

            My Testicular Cancer Support Kit
            First Oncologist Visit Checklist
            Simplify Cancer Podcast

            Comment


            • #7
              Originally posted by aerobadger View Post
              So am I understanding correctly the that in my scenario and three most recent values, the one of most significance is hGC and only because it is a mere two points higher than the normal level?
              Here's what the Testicular Cancer resource Center dictionary has to say about LDH:
              Lactate dehydrogenase - The enzyme LDH is found in many body tissues, especially the heart, liver, kidney, skeletal muscle, brain, blood cells and lungs. It often becomes elevated in advanced cases of testicular cancer. Clinically, it is useful as marker of advanced or bulky disease and, when elevated, as a marker for seminoma.
              And here is a wikipedia article: https://en.wikipedia.org/wiki/Lactate_dehydrogenase.

              So while the LDH *may* indicate seminoma, there are many other things that can cause arise in LDH, what is your lab's "normal range"?

              The mild rise in hcg is a larger concern, but as Doc E says, it may well be a lab error or anomaly, & should be re-tested. If it is in an upward trend, that would be cause for greater concern than one slightly high test.I personally, would not consider chemo in your circumstances without further testing to prove things out. I would want at least two more tests showing a rising pattern in one or more markers before going down the chemo route.

              Originally posted by aerobadger View Post
              And if there is indeed something going on, is it right to tell myself that the smaller the numbers are so far lessen the advancement of what ever may be happening?
              That is normally the case.Your low numbers give you a bit of time to see if they are truly rising or just a normal fluctuation. If you have active cancer, they will not go down without treatment.

              Dave

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

              Comment


              • #8
                So, at this point there is absolutely no conclusive proof that you have a recurrence. There is circumstantial evidence and that is it. I absolutely would not do 3xBEP without more conclusive proof, and I think Dr. E would recommend the same.

                I think what I would do, ESPECIALLY if you wish to avoid chemo, would be to continue on surveillance with a slightly increased test frequency (CT and tumor markers). There are then 3 resulting scenarios:

                1. Tumor markers conclusively positive, clear CT - 3xBEP
                2. conclusive evidence on CT (clear or conclusive tumor markers) - consult with experts on the viability of radiation and/or surgery in lieu of 3xBEP
                3. tumor markers and CTs remain very slightly elevated, but stable - party on, no treatment needed.
                6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                7/7/15: bHCG 56, AFP 42, LDH 322
                7/13/15 - 9/18/15: 4xEP
                10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                4/20/16: RPLND @ IU - teratoma only!
                3/29/2018 all clears up to this date!

                Comment


                • #9
                  Thank you for the input so far. I do have one tiny update as I logged onto my online patient portal and saw the new hGC value has been posted, so here is what I have:

                  Blood sample drawn on Nov. 28 which caused concern:
                  hCG: 7
                  AFP: 2.0
                  LDH: 325

                  CT abdominal was done a few days later with nothing of significance noted.

                  Blood sample drawn last Tuesday, Dec. 19:
                  hCG: 6.3
                  AFP: 2.4
                  LDH: 325

                  Davepet, by “normal range”, do you mean what my reports might list as “Reference Interval”? If so,

                  hCG: 0 - 3”
                  AFP: “0.0 - 8.3”
                  LDH: “121 - 224”

                  I am not sure those values are calibrated specifically off of an average based off of all of MY samples but I’m guessing that those ranges are set for everyone and not just specific to me. I do not have a copy of all my reports, just this recent blood sample from November 28 and the redraw from last Tuesday that I see on a portal.

                  If I remember correctly, the last GOOD doctor appointment, which was in early August, my LDH was in the 170’s with everything else listed normal and a good chest X-ray and CT abdominal.
                  Last edited by aerobadger; 12-26-17, 05:02 PM.
                  11.09.15: Mass found in right testicle
                  11.13.15: Right I/O
                  Late Nov. 2015: Stage I seminoma: Active surveillance
                  12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
                  Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
                  January 2018: Port installed, 3xBEP started
                  March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
                  May 2018: First post-chemo imaging planned

                  http://www.instagram.com/joshrunsaway

                  Comment


                  • #10
                    Originally posted by aerobadger View Post
                    Davepet, by “normal range”, do you mean what my reports might list as “Reference Interval”? If so,

                    hGC: “0 - 3”
                    AFP: “0.0 - 8.3”
                    LDH: “121 - 224”

                    I am not sure those values are calibrated specifically off of an average based off of all of MY samples but I’m guessing that those ranges are set for everyone and not just specific to me. I do not have a copy of all my reports, just this recent blood sample from November 28 and the redraw from last Tuesday that I see on a portal..
                    I don't think I've heard that exact term before, but yes, each lab normally has developed a "normal range" based on results they normally see for each test.This has nothing to do with you in particular, rather it's an average (of sorts) of all the times they performed that test. While your LDH result is outside of thtrange, it's not off the charts, & since LDH isn't exclusively a tumor marker, I wouldn't be alarmed at that number.The hcg is more specific & therefore more worrisome, but it is still pretty low, & went down in the latest test, so it need to be monitored closely

                    As I said before, I'd want to see a steadily rising trend before I'd do chemo.

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

                    Comment


                    • #11
                      Correct, those ranges are the typical "normal" ranges for the entire population. There are folks that exist with normal levels slightly outside those ranges.

                      LDH is released during cell breakdown. This can be breakdown due to cancer, or it can be due to cell damage and repair processes around muscles, bone, etc. Things like distance running and weightlifting or muscular injury can elevate it as well. Elevated LDH with clean CT's and tumor markers does not indicate cancer.
                      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                      7/7/15: bHCG 56, AFP 42, LDH 322
                      7/13/15 - 9/18/15: 4xEP
                      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                      4/20/16: RPLND @ IU - teratoma only!
                      3/29/2018 all clears up to this date!

                      Comment


                      • #12
                        Latest update for me is that apparently, a bulky tumor was found in my inguinal canal. As I am trying to understand it, a node that was attached to my spermiatic cord from the diseased testi has grown a bit, and they are suspecting it is seminoma.

                        I’m just curious how it was not seen in August. Could something like that really grow that quickly?

                        I bet that because I waited from 2014 until late 2015, I allowed that thing to slowly migrate in me. I knew something was up with me back in July of 2014, but I did nothing about it because I tried to convince myself it was all in my head, and I did not want to risk losing my opportunity to fly (I was right at the time getting my first flying gig, which I had worked so hard for and sought all my life).

                        Everyone is trying to reassure me that this thing is beatable and I will move on in my life.

                        Thank you all, so much, for everything so far.
                        Last edited by aerobadger; 12-29-17, 04:15 PM.
                        11.09.15: Mass found in right testicle
                        11.13.15: Right I/O
                        Late Nov. 2015: Stage I seminoma: Active surveillance
                        12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
                        Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
                        January 2018: Port installed, 3xBEP started
                        March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
                        May 2018: First post-chemo imaging planned

                        http://www.instagram.com/joshrunsaway

                        Comment


                        • #13
                          Don't second guess yourself with "what ifs". It is what it is & the only thing you can do now is figure what the best way to beat this is. I would expect 3xBEP or 4X EP will be recommended. Due to the location, surgery *might* be an option, but really not sure. I think I'd want the assurance of everything being killed off if I was in your place. Micro mets cannot always be seen in scans, but chemo will find them.

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

                          Comment


                          • #14
                            Don't second guess yourself with "what ifs". It is what it is & the only thing you can do now is figure what the best way to beat this is. I would expect 3xBEP or 4X EP will be recommended. Due to the location, surgery *might* be an option, but really not sure. I think I'd want the assurance of everything being killed off if I was in your place. Micro mets cannot always be seen in scans, but chemo will find them.

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

                            Comment


                            • #15
                              Tomorrow I am getting a port, and Monday I begin 3xBEP. I had a little chemo class today and man, does it feel like a lot. I feel like all these past weeks have just been nightmarish beyond belief and it just makes me respect everyone who has gone through this, no matter what his story is.


                              I’ am super-afraid. They say I will win, though.

                              Thank you, everyone.
                              Last edited by aerobadger; 01-04-18, 12:28 AM.
                              11.09.15: Mass found in right testicle
                              11.13.15: Right I/O
                              Late Nov. 2015: Stage I seminoma: Active surveillance
                              12.08.17: Blood work indicated possible relapse (7.0 hCG, 2.0 AFP, 325 LDH)
                              Mid-Dec. 2017: PET sees 5.9 x 5.3 x 7.9 cm lymph node in pelvis, right around my I/O incision, suspected seminoma IIc relapse
                              January 2018: Port installed, 3xBEP started
                              March 2018: 3xBEP finished, post-chemo blood work (undectable hCG, 2.1 AFP, 187 LDH)
                              May 2018: First post-chemo imaging planned

                              http://www.instagram.com/joshrunsaway

                              Comment

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