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Possible late relaps 3 years

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  • Possible late relaps 3 years

    Hi,

    I just had my 3rd year follow up CT scan and it revealed an enlarged para aortic lymph node, 1.3x1.4cm. PET did not show significant uptake. I was diagnosed in November 2015 with 65% seminoma 35% embroynal. Complete response to cisplatin and etoposide. No rplnd. markers have always been normal. Oncologist wants me to wait 3 months for f/u CT scan and say's he thinks it's a 50/50 chance, it's malignant. I saw a surgeon who said, he would wait 3 months as well and didn't seem to concerned about it. My fear is that it is a late relaps and if I wait 3 months, it could grow much bigger or spread. Thinking of RPLND to be proactive but really, who wants that surgery. Need advice on what I should do. Thanks, Robert
    Last edited by Sunny; 02-07-19, 08:36 PM. Reason: late relaps, rplnd, worried, para aorta

  • #2
    Personally I would not feel comfortable wating 3 months. I would push for maybe 6 weeks. Or maybe go out for another opinion.

    Also, i would reach out to Dr. Einhorn about this.

    Have they checked your remaining guy and ruled out that its not a second primary ?

    - Matt
    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
    Jan 9th 2019: 4.5 YEARS ALL CLEAR !

    Comment


    • #3
      Thanks for responding Matt. I had an ultrasound on the other testical a few months back. Maybe I should have a repeat one. I asked if I could get a repeat CT scan now as it is 5 weeks after and my Oncologist said I can but he doesn't think the size will have changed. That struck me as curious. The surgeon I saw is Joel Sheinfeld in NYC who has an excellent reputation with RPLND and is an expert with testicular cancers. I will try to get in touch with Dr. Einhorn.

      Thanks

      Comment


      • #4
        Sheinfeld & Einhorn are like the best two docs for TC. They will likely agree with each other and if they don't it will be a nit pick, not anything serious. You are in good hands, follow the advice.

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

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        • #5
          Thanks Dave

          Comment


          • #6
            They shouldn't be using a PET scan because they have a very high false positive rate and just aren't reliable for TC. The only time and place PET scans are used for testicular cancer is in the post chemotherapy management of bulky pure seminoma. As that's not the case here, they should just be doing CT scans and not PETs. That said, a 1.3x1.4cm node is definitely worrisome. I 3 month follow-up CT scan sounds about right, and I'd definitely get to either IU or Sloan for a second opinion. It's possible that this is teratoma even if none were in the original pathology, especially if tumor markers were originally elevated but now aren't.
            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


            • #7
              Thanks Steve. My question is, do I wait the 3 months for repeat CT or only 2 months. Oncologist said, 3 months but i don't want to risk it spreading.

              Comment


              • #8
                Just email Dr Einhorn or go see someone at Sloan, and do whatever they say to do. I suspect they'll want repeat imaging, but the question is timeframe and when they'd want to do it. It could be nothing. The trick is waiting long enough for something other than cancer to go away, but not waiting long enough to allow a recurrence to spread, and I have no idea what that interval might be, but the people at IU or Sloan will know.
                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


                • #9
                  I'm no expert, but I think that 1,4 cm node is slightly enlarged, and 3 years is still risky period in which reccurence is not uncommon. So, 50/50 chance that it is reccurence sounds reasonable. But it is cancer, 50% chance is enormuosly large chance, especially that you already had chemo. I wouldn't wait 3 months.
                  45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                  Waiting...

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