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7 year relapse.

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  • 7 year relapse.

    Hey all,

    I hate to jump back in but, here we go again. I was diagnosed 2010 with non-seminoma TC. Path was 50% teratoma, 40% EC, 10% yolk sac. R orchidectomy then RPLND. 2 positive nodes found then surveillance. A few weeks ago, my PCP mentioned an elevated TSH and was told to monitor. Then the thyroid began to get huge. Two weeks ago tomorrow, an ultrasound found many +1cm nodes and 3 large masses (4.7cm, 4.2cm, 2.3cm). My most recent visit with Sheinfeld had 'within normal limits' tumor markers and xray on 1/5/17. Unfortunately, my insurance no longer covers me at MSKCC.

    But had biopsy on thyroid and nodes and this is what it said: "Poorly differentiated carcinoma of germ cell origin, consistent w embryonal carcinoma. NOTE: The smears and cell block abundant tumor composed of a high grade malignant neoplasm with necrosis. Immunohistochemical stains performed on cell block show tumor cells positive for Pankeratin, PLAP, CD30, OCT-4 and negative for AFP and CD117. Glypican-3 shows non-specific staining pattern. The morphology and immunoprofile is consistent with germ cell tumor specifically embryonal carcinoma."

    Newest bloodwork as of yesterday states:
    AFP - 1.5 (normal limits: 0.0-8.3)
    hCB - <1 (normal limits: 0-3)
    LDH - 596 HIGH (normal limits: 121-224)

    CT scan tomorrow AM but I suspect something is in there, too. Has anyone heard of this sort of relapse? Anyone in NJ recommend an oncologist to work with? I'm not sure if I'm looking at surgery first or chemo or vis versa. Any experience out there? Could this be pure EC and not teratoma or pure teratoma?

    Thanks everyone,

    Jacob
    Right I/O 1/29/10, Teratoma (50%), Embroyonal Carcinoma (40%) and yolk sac
    RPLND - 4/5/10, Stage II
    Bowel Obstruction surgery post-RPLND - 4/26/10

  • #2
    I'm sorry to hear Jacob. This is a highly unusual relapse. EC tends to arise quickly during surveillance if it relapses. The location for a relapse is highly unusual as well. However, EC does sometimes relapse in unusual areas. I've seen EC relapse into the neck a few times, but never 7 years after surveillance. This is a chemo treatable situation. There may need to be surgery afterwards depending on the size and location of the lymph nodes. Surgery is also more likely given your original path with teratoma in it. However, we'll see how the lymph nodes respond to chemo.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

    Comment


    • #3
      JACOB~ so sorry you are going down this road AGAIN!!!!!!! I am hoping someone chimes in about NJ Oncologist- are you in North Jersey, middle or southern Jersey? I would definitely consult with a TC expert for relapse treatment. Again, so sorry you have replapsed 7 years later.
      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


      • #4
        Hate this kind of news.So ultrasound can detect enlarged lymph nodes or masses,not only CT or MRI ?
        .

        Comment


        • #5
          RJKD - I was really bummed to find out that this has come back, but I'm hopeful that between an excellent ENT surgeon and chemo that this can be thwarted. Still remains to be seen what else is going on internally as CT scan is tmw AM. It's frustrating 7 years out, but I'm optimistic. Thanks for the direction.

          Trekga - I'm located in Jersey City, NJ - up north right across the river from NYC. I am trying to get an appointment at MSKCC and will pay out of pocket for the consultation. Dr. Bosl was my original oncologist, and since he's now retired, I'm not sure who to see. Does anyone have MSKCC recommendations? Dr. Darren Feldman?

          axe900 - It was found, ironically, due to an elevated TSH marker. The cancer reared it's head as nodules around my thyroid and had an ultrasound that showed the hypoechoic masses and nodes. All signs pointed to an unrelated thyroid cancer until the fine needle aspiration biopsy showed embryonal cells.
          Right I/O 1/29/10, Teratoma (50%), Embroyonal Carcinoma (40%) and yolk sac
          RPLND - 4/5/10, Stage II
          Bowel Obstruction surgery post-RPLND - 4/26/10

          Comment


          • #6
            Obviously, I am sorry to hear about all of this. Have they done a scrotal ultrasound to check for a second primary vs. a relapse from 7 years ago?

            Also, if it were me I would go see Dr. Darren Feldman. He is a very nice guy and certainly knows his stuff. I would have no problems with decisions he would make for my care, if that helps any.

            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
              Terrible news, Jacob, but try to look at the "bright" side: you haven't received chemo so far so it should definitely work. It would be more scary if you had this relapse 7 yrs post BEP. Late relapses are extremely rare (2-5% after two years if remember well the stats).

              Comment


              • #8
                Mike - Thank you for chiming in as it does help. I'm working to schedule an appointment with Dr. Feldman.

                sanis - "bright" side noted. Facing this with positivity. Thanks for encouragement.

                Right I/O 1/29/10, Teratoma (50%), Embroyonal Carcinoma (40%) and yolk sac
                RPLND - 4/5/10, Stage II
                Bowel Obstruction surgery post-RPLND - 4/26/10

                Comment


                • #9
                  Let us know if you get to see Dr. Feldman. So sorry you are dealing with TC AGAIN!!!!!
                  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


                  • #10
                    Hi all,

                    It's been a long time since I've posted about my relapse.

                    I was able to get in Dr. Feldman at MSKCC. 4xBEP in the bag and the masses around the thyroid and the cervical lymph nodes (levels 2-4) all showed marked decreases. All by at least 50% and most by 75%. When comparing my neck CT pre and post chemo, chief ENT Dr. Wong at MSKCC said it was the most significant response to chemo he had ever seen. There were also mets to the kidney (chemo shrunk mass by 75%), the right lung (now so small it will be monitored) and the mediastinum (shrunk but not significantly).

                    At first, a total thyroidectomy and bilateral lymph node dissection (levels 2-4) were put on the table for an upcoming 2/10/18 surgery. There are still a couple of nodes that fall >1cm with the largest being 1.2cm. After conferring with a few of his colleagues (including Sheinfeld), Dr. Feldman suggested to only go for the total thyroidectomy and cut out some surrounding lymph nodes for biopsy. If they come back necrotic or all clear, he would put his bet that the rest of the nodes in the neck are cancer free (and confirm no active EC with a post surgery PET). Not going through with the neck dissection is due to the invasive 10 hour nature of the surgery and potential serious complications involved. If positive nodes or teratoma found, we'll move ahead with the bilateral neck dissection. That being said, the risk of teratoma is real (original path had 50% teratoma, post RPLND path was 100% pure EC). I'm concerned that not going through with a bilateral node dissection would be too risky.

                    Does anyone have any objective opinions on this situation? Would you go straight ahead with the bilateral neck dissection or follow the lead of MSKCC team and do thyroidectomy and surveillance? Should I reach out to Dr. Einhorn for his opinion? There's a lot going on, and germ cell tumor thyroid involvement seems to be uncharted waters in medical literature so there's not much to hang my hat on.

                    As for the other mets, they will be taken care of after this first operation.

                    Thanks everyone.
                    Right I/O 1/29/10, Teratoma (50%), Embroyonal Carcinoma (40%) and yolk sac
                    RPLND - 4/5/10, Stage II
                    Bowel Obstruction surgery post-RPLND - 4/26/10

                    Comment

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