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Relapsed Non-Seminoma

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  • Relapsed Non-Seminoma

    Three months after 4EP, my blood work was still fine. However, started having bouts of bad back pain. They did a CT scan and found an enlarged lymph node.

    Upper endoscopy biopsy of the lymph node indicates it's a relapse.

    Oncologist is trying to get me into see someone at
    Stanford Urologic Cancer Program to get a second opinion, but failing that, we're going to proceed with TIP chemo.

    That sound reasonable? This is all pretty overwhelming. I thought I was out of the woods!

    Detailed timeline:
    2017-04-27 - After several days of discomfort, noted lumps on right testical.
    2017-05-01 - First doctor appointment with PCP
    2017-05-02 - Ultrasound. Masses noted in right testicle.
    2017-05-04 - CT Scan and first lab work. CT Scan clean. AFP slightly elevated.
    2017-05-10 - More blood work. AFP higher.
    2017-05-15 - Surgery, right I/O.
    Non-Seminoma (embryonal carcinoma - 70%, seminoma - 20%, yolk sac 10%).
    Lymphovascular invasion was present. Stage IB or IS.
    2017-05-23 - First meeting with Oncologist.
    2017-05-30 - Third blood work. First post surgery. AFP has gone down from per surgery but still elevated.
    2017-06-03 - Fourth blood work. AFP has increased above what it was pre surgery. In the 50s now.
    2017-06-05 - Second CT Scan. Enlarged lymph node extending around the anterior aspect of the abdominal aorta. Now Stage IIB.
    2017-06-12 - Starting 4EP. AFP in the 150s.
    2017-06-27 - AFP down to the 50s.
    2017-07-03 - Starting Round Two.
    2017-07-16 - AFP down to 7.
    2017-07-24 - Starting Round Three.
    2017-08-14 - Starting Round Four.
    2017-08-18 - Last day of Chemo
    2017-08-29 - CT Scan
    2017-08-31 - Got the all clear!
    2017-11-30 - 3 month blood test looks good.
    2017-12-06 - excruciating lower back pain in the early hours. CT Scan at urgent care. Found mass in right abdominal lymph node. Ended up checking into hospital for pain and hydration.
    2017-12-07 - MRI; Everything looking fine-ish on the spine. Some slight bulging in the mid back. Checked out of hospital that night.
    2017-12-08 - PET Scan.
    2017-12-11 - Confirmed mass in right lymph node. Confirmed AFP has actually dropped since Nov. Getting appointment for biopsy.
    2017-12-20 - Upper endoscopy biopsy. Yes, cancer. Looks to be the same.
    2017-12-24 - Crazy back pain again. ER. Gone the next day.
    2017-12-26 - Heard back from Oncologist. Trying to get me into seeing someone at Stanford Urologic Cancer Program for a second opinion. Failing that, going to do TIP chemo.

    CT Scan details:
    Retroperitoneum: Just inferior to the left renal artery, there is
    an enlarged lymph node seen extending around the anterior aspect
    of the abdominal aorta measuring 4.0 x 1.4 cm, axial image 106.
    Lymph nodes: There has been interval development of a dominant
    preaortic lymph node measuring 2.0 x 4.4 x 2.1 cm (AP X TRV X
    CC), series 3 image 288. This abuts the anterior wall of the
    aorta and posterior wall of the third portion of the duodenum.

    2017-05-15; right I/O. Non-Seminoma. Stage IIB.
    2017-06-12 -> 2017-08-29; Chemo. 4EP.
    2017-12-08; relapse.

  • #2
    I'm sorry to hear you've had a're not alone in having some issues with your lymph nodes, especially there was some involvement initially. Have you reached out to Dr. Einhorn for his opinion? If he gives his blessing on your treatment plan, that's the best there is. Here's his info: Best of luck and keep us posted!


    • #3
      hi there,

      I am so sorry You need to go through this. I am not entirely sure that the back pain is caused by the tumor - what do the doctors think?

      Seemingly your (mainly EC) tumor became tumor negative which is not so rare with this kind of TC.

      How are you coping with the chemo? any second opinion?

      we are here to support,


      • #4
        Sorry to hear about the relapse... How are you taking it all? Did you get the second opinion?
        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


        • #5
          If it is an isolated node then RPLND may be an option but from what I have heard, if you are symptomatic then I believe that chemo is recommended. Plus, at 4.4 cm I think most would say chemotherapy over RPLND.

          Now, the issue is that is second-line therapy or high dose chemotherapy with stem cell rescue the better or options? Unfortunately, this answer remains elusive as both are logical, effective and good choices. Because of this there is a current trial, the Tiger Trial, that is looking at which of these is better. It looks like Stanford and UCSF are sites for the trial so it may be worth looking into it: Again, the Tiger Trial is not a trial of last resort or anything like that but rather to answer the question of which of the top two options are the best.

          While relapses stink, from what I can tell of your timing and negative markers, etc. that this is a best case stinky situation. (if that makes sense).

          Keep us posted.

          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
          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 if you would like to chat privately so as to avoid any delays.


          • #6
            Yeah, you've got it there Mike. Went to Stanford for a second opinion. Just had a second biopsy done there today. They used a CT scanner to do it. My previous endoscopic biopsy apparently didn't get enough material to be conclusive.

            So, if today's biopsy confirms a relapse, or if my AFP goes up, I'll be doing the trial at Stanford. 50/50 on which treatment I get.

            I'm just taking things one day at a time. This has been super hard on my wife though.
            2017-05-15; right I/O. Non-Seminoma. Stage IIB.
            2017-06-12 -> 2017-08-29; Chemo. 4EP.
            2017-12-08; relapse.


            • #7

              Lovely. Got a CT Scan, brain MRI and a bunch of blood tests next week. Then I get to see which treatment plan they're going to give me.

              edit: still no change to AFP. Hematocrit is dropping though. 42.1 -> 40.2 -> 39.7, over the last two weeks. I'll have to ask what that's about.
              Last edited by j5m; 01-12-18, 12:34 PM.
              2017-05-15; right I/O. Non-Seminoma. Stage IIB.
              2017-06-12 -> 2017-08-29; Chemo. 4EP.
              2017-12-08; relapse.