What to do next ?

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  • testicles001
    Registered User
    • Sep 2016
    • 35

    What to do next ?

    I had the scan result which shows 2 mildly enlarged interaortocaval with largest measuring 9mm in short axis, which were not present there. usually the right testicle cancer cells moves to the interaortocaval nodes. How can one know if they are cancer or no ? Pet scan or biopsy will show that ? The blood tests were all ok, maybe because if they are cancerous there is not much secretion. I have an appointment next week with oncologist. What you think they will advise ? And what are your recommendations ? Dr Einhorn reply was:

    It is difficult to provide advice long distance, but if your testis cancer was on the right side and an experienced radiologist felt this was a NEW lymph node between the aorta and inferior vena cava, it is PROBABLY from seminoma. Options would be to repeat CT in 6-8 weeks, since it is less than a cm in size and if further increase treat it as a metastatic lymph node, or to proceed with treatment now. I would never recommend chemo here and options now ( or in 6 weeks ) would either be radiotherapy or RPLND. Here in the U.S.we have recently been evaluating RPLND rather than radiation with the hope and expectation it would be as effective and not associated with any of the rare late complication from abdominal radiation therapy.

    In europe they usually do not perform RPLND, but I am scared from radiotheraphy long term secondarly malignancies. What's your advise guys about all this ?

    My brain is running all over.



    09/2016 - 3cm no vascular invasion seminoma in right - orchiectomy + surveillance + normal blood work
    12/2016 - ct scan clear + normal blood work
    03/2017 - ct scan clear + normal blood work
    06/2017 - only blood work - normal
    09/2017 - mildly enlarged 2 interaorotocaval lymph nodes with the largest measuring 9mm in short axis diameter - the rest all clear
  • Davepet
    Registered User
    • Mar 2010
    • 4459

    #2
    Negative markers tell us nothing, only positive ones are really useful as an indicator of active disease.

    I would lean towards a re-scan in 6 weeks to see what happens, as Dr E suggested.

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

    Comment

    • testicles001
      Registered User
      • Sep 2016
      • 35

      #3
      Thanks man appreciated your insight.....ideally blood results do not get high cos it means active substances is going in blood which is not good I guess.

      Comment

      • Trekga
        Registered User
        • Jan 2017
        • 882

        #4
        Dr. E and Dave concur, so that we would be the direction to move, rescan in 6 weeks.
        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

        • testicles001
          Registered User
          • Sep 2016
          • 35

          #5
          Thanks Trekga, how is your grandson doing after rplnd and chemo ?

          Comment

          • testicles001
            Registered User
            • Sep 2016
            • 35

            #6
            They recommended a pet scan but not to wait. Is that OK?

            Comment

            • Davepet
              Registered User
              • Mar 2010
              • 4459

              #7
              The only problem I see with PET scans is if there is a false positive, you may receive treatment that isn't needed. In 6 weeks time, you can get a better idea of what is going on, but if it's cancer, it should still be just as treatable as it is now.

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

              Comment

              • testicles001
                Registered User
                • Sep 2016
                • 35

                #8
                Sh*t, nothing is 100% lol. What is the rate of false positive. Is 9mm too small for pet scan to detect ? I read for seminoma it works quite accurate good

                Comment

                • testicles001
                  Registered User
                  • Sep 2016
                  • 35

                  #9
                  What should i do, pet scan in 3 weeks or ct scan in 6 weeks ?

                  Comment

                  • Mike
                    Administrator
                    • Apr 2008
                    • 973

                    #10
                    It is my understanding that there is no real use for a PET scan except in one specific situation in seminoma after chemotherapy if there is a remaining mass >3cm. If it were me, I would wait as mentioned by Dr. Einhorn. Let's say the PET scan lights up another area like your liver or rib (as a false positive) but those two small nodes are unchanged. Then what? Does one assume that there has been more spread and start chemotherapy? Personally, I wouldn't want to take that risk and would stick to 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 [email protected] if you would like to chat privately so as to avoid any delays.

                    Comment

                    • testicles001
                      Registered User
                      • Sep 2016
                      • 35

                      #11
                      i need to find out if pet scan can detect the seminoma or no...else why they would recommend it ? i think they would want to treat it as soon as possible in case there is something ? - the only problem is , if someone can answer me .....if we have a true negative its ok, if its a false negative that would be caught up with next ctscan enlarged...if its a positive, how can they know its a true positive or no ?

                      Comment

                      • testicles001
                        Registered User
                        • Sep 2016
                        • 35

                        #12
                        If a lymph node is enlarged again (more) how to understand if it is really cancer or no ? usually they start treatment without confirming ?

                        Comment

                        • singa76
                          Registered User
                          • Apr 2017
                          • 35

                          #13
                          Quoting from the EAU Guidelines on TC - 2011 update:

                          "There is no evidence for using a fluorodeoxyglucose-positron emission tomography (FDG-PET) scan in staging.However, FDG-PET is recommended in patients with seminoma who have any residual mass at least 6wk after chemotherapy, to help decide between watchful waiting and active treatment.29 FDG-PET is not recommended in the restaging of patients with NSGCTs after chemotherapy."





                          Comment

                          • testicles001
                            Registered User
                            • Sep 2016
                            • 35

                            #14
                            Thanks a lot I found similar studies that it is not good for staging before radio or chemo as it has lot of false positives etc. I had to sign a paper to refuse pet scan at hospital. Stupid oncologist. I also changed my oncologist.

                            Comment

                            • Trekga
                              Registered User
                              • Jan 2017
                              • 882

                              #15
                              Not all Oncologists treat a lot of TC. Same with Urologists. Glad you are going with CT, but with Seminoma i have seen a few doctors use PET Scans.
                              Please keep us updated.
                              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

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