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After RPLND: 1 metastatic lymph node

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  • After RPLND: 1 metastatic lymph node

    Hi; I am a Turkish testicle cancer patient from Turkey. First of all I would like to share my story:

    I was experiencing abdominal pain for about 1.5 years. I have visited a number of different doctors and hospitals, unfortunately none of them could identify the problem. On January, I have visited an Internal Diseases Specialist, who suspected of Aortic Aneurysm. After Ultrasound and MRI scans, they found a 5.5 x 4.5 cm mass in my abdomen. He, again, suspected of testicle cancer and demanded another Testicular Ultrasound scan. And an 8-mm testicular mass was seen there. They said I was a Phase IIC Testicular cancer patient.

    I had my right I/O on 1st of February, and started 3xBEP afterwards. The mass in the testicle was pure seminoma. The chemo ended on April 17, my oncologist demanded an MRI scan. The mass in my abdomen was slightly shrank, but was still over 3 cm's. After a PET scan, it also seemed active and the oncologist suggested an RPLND operation to remove the mass.

    After discussing the options, on 29 May, I had an RPLND operation. Initially they told the mass was over vena cava and they might replace it with a graft. But during the operation, they could completely resect the abdominal mass, and also the mass inside vena cava, without the need for a graft.

    The pathology report says the main tumor is 5.8x5.6x3.5 cm's and the tumor inside vena cava is 2.6x2x1 cm and all of them was teratoma.

    But as the urologist pointed, the report also says there are 6 lymph nodes analysed and 1 of them was metastatic. He didn't have any idea if I will need any more chemotheraphy, so he will discuss my situation with an oncologist next week. I also will discuss it with my own oncologist.

    I wanted to share my experience if someone had gone through a similar experience and give me advice on this. Regards from Turkey, hope we all recover with no relapses

  • #2
    Was the metastatic node also seminoma?
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

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    • #3
      So sorry. I would highly suggest emailing Dr. Lawrence Einhorn a top TC Oncologist in the US and beyond (he developed BEP chemo back in the 1970s). Dr. E's email is leinhorn@iu.edu
      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
        I have learned that the other node was also teratoma, so I am currently in surveillance Thanks a lot for your help.

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        • #5
          I am surprised with that big of a tumor in your VC, it didn't get occluded (blood was still flowing). What did your lung CT show? Any nodules or blood clots? Have you felt weakness in your legs or any swollen ankles over the last year? I'd make sure that I get a brand new CT scan to be read by a completely new experienced radiologist in TC. MRI is NOT recommended for TC, although it is good for the hospital to charge you as much as they can. Make sure your cava is clean. By the way, you could still function without a cava if need be. It may be tough for a while until your body develops collaterals, perhaps for 3 months. But, I suspect the flow in your cava is not much anyway. I would not do the graft personally....Make sure your lungs and retroperitonium are clean as well. Teratoma is known to transform into malignant cancers. Surgery is the most effective way to get rid of them. As others suggested, please reach out to Dr. Einhorn too.
          Jan '11 - Stage IIIc, Mets in lungs and liver, abdo 7*7, pulmonary embolism
          Right I/O AFP 13,000, bHCG 110, Scrotal Hematoma, IVC Filter
          4*BEP AFP 20 end of 4*BEP
          May '11 - RPLND @ Indiana U - inferior vena cava dissected, necrosis, AFP<5
          Surveillance (blood & X rays) and all clear for 24 months
          April '13 - AFP 26 , went up to 46 in a week, Negative CT Scan, Ultrasound and head MRI
          4xTIP - almost normal AFP, but started rising again
          2 x HDC with Autologous Stem Cell Transplant - AFP almost normal but started rising again
          Lost kidneys, damaged liver, chirhosis, ascites 2 liters per day, dialysis 3 times per week, disabled
          2 Lung Wedge Resections -

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          • #6
            Awesome news they were all teratoma!
            3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/12/18 All clears up to here!

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            • #7
              I'm not sure where you are in Turkey but Dr. Ilker Tinay in Instanbul may be someone to get a hold of too if you need any second opinions. He is on Twitter https://twitter.com/itinay and LinkedIn https://www.linkedin.com/in/ilker-tinay-25144192/

              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


              • #8
                Sorry for late answer:

                @Tarc79:

                I have no nodules in my lung, the stage was IIC so there was only lymph node metastasis. Interestingly, I had no problems with my legs. Even, I am a cyclist I only had terrible abdominal pain before, which led me to the diagnosis. My onc. told me that I am clean for now and I'm in surveillance.

                @Mike:

                Thanks for the advice, I'm in Istanbul. I'll try to reach him for another opinion

                Comment


                • #9
                  Yes, definitely reach out to Dr. Ilker Tinay.
                  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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