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  • Kind of new member

    Hello, I've just registered, but I've been a lurker. I had a left I/O on May 16th that was quite large because I never did anything about it until it was extremely uncomfortable. But my Pathology report stated that the tumor was dead. Now, fast forward to September, my most recent PET scan is showing two nodes that are "Brighter/hotter" but not larger, and my tumor markers are all low- AFP is 1.7, HCG is less then 10 and LDH is 197.

    However, my oncologist seems frustrated as the PET and blood work are not matching. But from what I am understanding, the tumor markers will only indicate additional cancer if there is a presence of additional testicular cancer correct?

    My options after my follow up yesterday are:
    1- Continue to monitor and get another PET scan and blood drawn in November
    2- Chemo- 4 times of BEP I believe
    3- Surgery to remove the nodes

    My oncologist will be at a conference with additional oncologists and they will make a decision there on what the appropriate next steps are, what do you think?
    DX 5/16/2017
    L I/O 5/16/2017
    AFP 51 HCG- always below 10 LDH- always below 200
    Primary tumor- PT2
    Staged at IB.

    PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

    All CT scans to current have not shown an increase in lymph node size.

    8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

  • #2
    I personally always prefer least invasive procedure available

    Comment


    • #3
      4x BEP seems like a lot based on what you said. Low markers and Lymph not very big I'd imagine 3xBEP would be sufficient
      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop! 3/19/18 All clear!

      Comment


      • #4
        Where are you located or where are you being treated?

        If you were stage I in May, I am assuming that his was your first scans since the original scans in May?

        Do you know why they are using PET scans and not just CT scans? There is really no use for PET scans over CT scans in the setting of diagnosis or monitoring of testicular cancer (except for one specific scenario if residual masses exist after chemotherapy for seminoma). The issue is that when using PET these issues come up. Could it be cancer? Sure. Could it be false positives? Sure.

        Do you have any idea how big and the locations of the nodes were in May on CT and on the PET scan recently? Do you have access to a copy of these results?

        Mike
        Oct. 2005 felt lump but waited over 7 months.
        06.15.06 "You have Cancer"
        06.26.06 Left I/O
        06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
        06.30.06 It's Official - Stage I Seminoma
        Surveillance...
        Founded the Testicular Cancer Society
        6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

        For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

        Comment


        • #5
          I will get my actual information and stats tomorrow or this weekend. I am located in South East Michigan going to Henry Ford. This is my second PET, I'm not sure why he's choosing this scan vs a CT. My nodes he said we're small and they haven't grown since the first PET.

          My AFP started at 8.4 then dropped to 3, then 1.5 now 1.7
          DX 5/16/2017
          L I/O 5/16/2017
          AFP 51 HCG- always below 10 LDH- always below 200
          Primary tumor- PT2
          Staged at IB.

          PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

          All CT scans to current have not shown an increase in lymph node size.

          8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

          Comment


          • #6
            Definitely let us know what you find out.

            Mike
            Oct. 2005 felt lump but waited over 7 months.
            06.15.06 "You have Cancer"
            06.26.06 Left I/O
            06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
            06.30.06 It's Official - Stage I Seminoma
            Surveillance...
            Founded the Testicular Cancer Society
            6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

            For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

            Comment


            • #7
              My original CT was sort of inconclusive, but a PET/CT confirmed an active,enlarged node.I had nothing but PET scans throughout surveillance.In your case, the node is not enlaged, just shows activity from the dye, I suspect a false positive. Please let us know what you find out.
              Dave
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Went through all my paper work, I've never actually been told what clinical stage I am, but based off of what I know and my pathology report- I think I am stage pT2, Nx Mx. I found my AFP was 51, and my HCG and LDH were both elevated but not exceptionally high. Yesterday another urologist called me and stated that my nodes had actually increased in size from 5mm to 8mm, however they do not typically look at doing the surgery to remove them until they are 1cm. My oncologist did not inform me of them increasing in size, so I am getting in contact with both doctors to schedule a meeting so that we are all on the same page with the same information.
                DX 5/16/2017
                L I/O 5/16/2017
                AFP 51 HCG- always below 10 LDH- always below 200
                Primary tumor- PT2
                Staged at IB.

                PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

                All CT scans to current have not shown an increase in lymph node size.

                8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

                Comment


                • #9
                  Good to get the doctors all on the same page.

                  Did the I/O pathology report indicate what the histology was? Or just that it was necrotic tissue? Is there something specific that makes you think you were pT2?

                  My understanding is that elevated tumor markers usually indicate cancer, though there are some other conditions that can cause one or more to be somewhat elevated for different reasons. Unfortunately a normal marker level doesnít indicate the absence of cancer.

                  My personal opinion is that it seems a bit premature to talk about chemo or surgery just yet, especially if the nodes arenít enlarged. If you just continue surveillance, you could ask to be checked again in October rather than waiting until November. Itís not a strong opinion, since I donít have all the info for your case.

                  Comment


                  • #10
                    The pathology report did state that the tumor itself was necrotic actually. The report also said it was pT2. As of right now we are on the same page of waiting until the next appointment to determine the next steps, I am all for waiting, but also do not want it to get further then where it could be right now. Thank you all for your input and thoughts as well!
                    DX 5/16/2017
                    L I/O 5/16/2017
                    AFP 51 HCG- always below 10 LDH- always below 200
                    Primary tumor- PT2
                    Staged at IB.

                    PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

                    All CT scans to current have not shown an increase in lymph node size.

                    8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

                    Comment


                    • #11
                      Finally got some time to get my papers and post up. The pathology states- Mixed germ cell tumor- 50% seminoma, 25% yolk sac tumor, 15% carcinoma and 10% teratoma. It also states that i have Lymph Vascular Invasion- Present.

                      Primary Tumor- pT2- Tumor limited to the testis and epididymis with vascular/lymphatic invasion or tumor extending through the tunica albuginea with involvement of the tunica vaginalis.
                      DX 5/16/2017
                      L I/O 5/16/2017
                      AFP 51 HCG- always below 10 LDH- always below 200
                      Primary tumor- PT2
                      Staged at IB.

                      PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

                      All CT scans to current have not shown an increase in lymph node size.

                      8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

                      Comment


                      • #12
                        An update! I went for additional blood work and my AFP was 1.3, LDH- 197 and HCG- <10. Which is all good, however, my oncologist noted that we may not be doing PET scans this next round of testing, and may do a CT scan. Can the CT scan pick up node size if they have increased?
                        DX 5/16/2017
                        L I/O 5/16/2017
                        AFP 51 HCG- always below 10 LDH- always below 200
                        Primary tumor- PT2
                        Staged at IB.

                        PET and CT scans showed possible lymph node enlargement and "hot" nodes but markers never increased.

                        All CT scans to current have not shown an increase in lymph node size.

                        8/16/2018- HCG and LDH All within normal range- AFP dropped further to 1.1.

                        Comment


                        • #13
                          CT is the gold standard for surveillance of testicular cancer. Most experts that I have spoken with agree that there is no real utility to using PET/CT over CT for surveillance. Some do it, because they can, but it is not the gold standard and can lead to false positives. Glad to hear that your tumor markers were good and all the best on the CT.

                          MIke
                          Oct. 2005 felt lump but waited over 7 months.
                          06.15.06 "You have Cancer"
                          06.26.06 Left I/O
                          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                          06.30.06 It's Official - Stage I Seminoma
                          Surveillance...
                          Founded the Testicular Cancer Society
                          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                          Comment


                          • #14
                            Originally posted by 9formula6z View Post
                            Can the CT scan pick up node size if they have increased?
                            The ct scan is the only scan that can pick up subtle size differences. Pet scans try to measure cell activity (cancer cells tend to be very active) by using a radioactive sugar based solution. Very active cells absorb more of the sugar based solution & "light up" on the scan, but the shape & size isn't imaged very well. Normally they will use a combined CT & PET scan with the CT portion showing shape & size & the PET portion showing relative activity, the computer combines them into an image that shows both.

                            While it is often mentioned in here that the PET potion of the scan isn't that useful for most types of TC, I've yet to see an explanation of why, besides the possibility of a false positive. Seems to me that a node that "lights up" without other diagnostic indication of disease should not be reason for further treatment, but should be reason for careful monitoring going forward.

                            But I'm no doc.

                            Dave
                            Last edited by Davepet; 11-09-17, 10:57 PM.
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #15
                              Dave, what about MRIs?
                              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. They say I still have a 10% relapse chance.
                              5/9/17 One and a half year all clear.

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