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  • Who would have thought it

    11 years clear since my mixed stsge 1 with BEPX2 and boom I have a scan on a slipped disc in my spine and they find enlarged parortic lympth nodes. They are 3 cm , bloods normal and scan on testicle is clear which in its self has got my oncologist baffled. Is it from the first cancer 11 years ago so the BEP did not work, is it a new cancer from remaining testiscle which is clear on scanning ( let's not forget my older cancer was right sided and this is left ) and to cover all bases has put me in got TIP chemo. Prof Einhorn and Dr Nichols suggest 4xEP, so yes I am confused but prof Clarke has changed to EP X 4. So start on Monday
    remission from july 2003
    BEPx2
    artrail fibulation x2
    stage2 teratoma mixed seminona
    HRT testogel ongoing
    www.checkemlads.com uk testicular cancer

  • #2
    If it was a new cancer, more than likely you would have some kind of mass on your remaining I believe. It is rare that testicular cancer recur so far into the future. But the slight chance of it happening is still there. Good luck with starting the 4xEP soon. Hopefully that can knock down those lymph nodes completely!
    3/11/14 - Right orchiectomy
    non seminoma - stage IIC 100% embroyal carcinoma
    2 enlarged lymph nodes
    3/31/14-5/27/14 - BEPx3
    lymph nodes decrease in size but still about 3 cm each
    7/16/14 - RPLND - found only dead cancer

    Comment


    • #3
      Thanks Dan , Yep I know a far few lads who have lost both, if mine is ocullt seminoma then yes I suspect there must be seminoma in the other testiscle even if it's unseen.
      remission from july 2003
      BEPx2
      artrail fibulation x2
      stage2 teratoma mixed seminona
      HRT testogel ongoing
      www.checkemlads.com uk testicular cancer

      Comment


      • #4
        Are they not even considering that it might be teratoma?
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #5
          Philly, with all you have done advocating for so many others, be sure you let others advocate for and help you through this. You've been an inspiration to thousands and I'm sure that will continue to be true.

          Comment


          • #6
            Wow...that's nuts !

            I am with Dave. Considering your 1st was Non Seminoma it may yet be a teratoma...in which case chemo will not work.

            Another thought is that it may be a second (new) cancer; a non-testicular primary.

            Is there anyway to get a biopsy before doing chemo ? I'd hate to get started on chemo only to find out that it was a teratoma and you need RPLND or something to that effect.

            - Matt



            ....and yes the pun was intended.
            March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
            March 13th: Left IO 100% Classic Seminoma
            6.3 x 5.1 x 3.8 cm, no invasion of anything
            LDH never fully normalized
            Stage: IS
            Watchful Waiting
            May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
            May 12th: started 3xBEP
            Neupogen during Cycle 2 and 3
            July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
            August 4th: Post Chemo CT/PET scan
            September 4th: Port removed
            January 8th 2018: 3.5 YEARS ALL CLEAR !

            Comment


            • #7
              Hi guys, yes the biopsy shows seminoma . And cheers for the kind ccmments . It's a strange one yes . If they can find a primary then it would of course be so much clearer. Let's be honest if it's from original tumour 12 years ago I would probably be dead at it was a mixed tumour
              remission from july 2003
              BEPx2
              artrail fibulation x2
              stage2 teratoma mixed seminona
              HRT testogel ongoing
              www.checkemlads.com uk testicular cancer

              Comment


              • #8
                Originally posted by Davepet View Post
                Are they not even considering that it might be teratoma?

                Sorry yes it's seminoma , biopsy ct done
                remission from july 2003
                BEPx2
                artrail fibulation x2
                stage2 teratoma mixed seminona
                HRT testogel ongoing
                www.checkemlads.com uk testicular cancer

                Comment


                • #9
                  Hi Phillymorris.

                  I'm in a similar situation. 4 years post 2xBEP my markers were ever so slightly elevated at 28. A PET scan uncovered 3 slightly enlarged nodes, only 6/7 mm each!

                  I have just undergone 4 rounds of TIP and am now three weeks over it. Whilst most recent PET scan shows a total response, I am now being put forward for a RPLND.

                  Good luck with your course, here's hoping it goes well for yoo.

                  Joe

                  Comment


                  • #10
                    Originally posted by J1981 View Post
                    Hi Phillymorris.

                    I'm in a similar situation. 4 years post 2xBEP my markers were ever so slightly elevated at 28. A PET scan uncovered 3 slightly enlarged nodes, only 6/7 mm each!

                    I have just undergone 4 rounds of TIP and am now three weeks over it. Whilst most recent PET scan shows a total response, I am now being put forward for a RPLND.

                    Good luck with your course, here's hoping it goes well for yoo.

                    Joe
                    well done to you, my markers are normal and this time is seminoma so I have a decent chance of recovery, even if they can't find primary
                    remission from july 2003
                    BEPx2
                    artrail fibulation x2
                    stage2 teratoma mixed seminona
                    HRT testogel ongoing
                    www.checkemlads.com uk testicular cancer

                    Comment


                    • #11
                      Well, since it is seminoma, it is possible it is a recurrence of your first primary. Although pretty rare, especially after chemo, seminoma *has* been know to recur at 10+ years before....

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

                      Comment


                      • #12
                        That's what's made them wonder, this is left sided preortic nodes enlarged and original was right testicle
                        remission from july 2003
                        BEPx2
                        artrail fibulation x2
                        stage2 teratoma mixed seminona
                        HRT testogel ongoing
                        www.checkemlads.com uk testicular cancer

                        Comment


                        • #13
                          Originally posted by phillymorris View Post
                          That's what's made them wonder, this is left sided preortic nodes enlarged and original was right testicle
                          That is a bit unusual for a recurrence, not sure if it's unheard of, though. Extra gonadal germ cell tumors, while quite rare, might explain this, it certainly seems like what may be happening here:
                          http://tcrc.acor.org/egc.html

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

                          Comment


                          • #14
                            Hi Philly not sure if they have done IO yet, but I had large paraortc nodes left side and no eviddence of testes tumor by ultrasound. However, when they performed IO pathology they noted evidence of Burnt out Tumor. if you had the IO already this is likely a mute point. if not Burnt out primary could be another consideration of your case. Best wishes in your further treatment.

                            Comment


                            • #15
                              There doing IO AFTER RWA, on EPX4 for a while , nodes are 3cm so it's not to bad, I have calcification in the trsticle which as we know can distort a clear diagnosis on ultra sound
                              remission from july 2003
                              BEPx2
                              artrail fibulation x2
                              stage2 teratoma mixed seminona
                              HRT testogel ongoing
                              www.checkemlads.com uk testicular cancer

                              Comment

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