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New member 24 yo son with Mediastinal Nonseminomatous Germ Cell tumor

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  • #46
    Exhale at least for a bit! Hopeful, that the surgery removes the tumor with no complications, and that AFP drops afterwards. Thanks for letting us know what the surgeon thought.
    17 year old son Grant dx 12/21/16
    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
    pre/o CT Scan 12/22/16 normal
    r/o 12/22/16
    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
    BEP x 3 1/27/17
    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.

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    • #47
      Happy to hear the news. Best of luck with hopefully the last phase.
      Aug 2013: vague fevers, exhaustion, weight loss, night sweats
      September 2013: became a father
      October 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
      December 2013: cycle 1, VIP 3wks
      January 2014: cycle 2, VIP 3wks, became allergic to polysorbates
      February 2014: AFP 813, bHCG: 0, scrapped chemo
      February 2014: resection, upper left lobectomy, 7 x 6 x 5 cm tumor, teratoma / adenocarcinoma
      March 2014: AFP 70
      March 2014: AFP 19
      April 2014: AFP 11 !
      <fast forward>
      September 2014: surveillance, AFP < 12 for almost 4 years

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      • #48
        Update: Due to large blood clot in heart, surgery moved to Temple Hospital. Pre-admission testing on Monday, surgery Tuesday. Liver enzymes were high (unexplained) but have dropped into normal so we seem to be a go. So much to worry about and I'm fairly unpleasant.

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        • #49
          I bet you are worried, keeping your son and you in my thoughts. Update when you are able.
          17 year old son Grant dx 12/21/16
          pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
          pre/o CT Scan 12/22/16 normal
          r/o 12/22/16
          Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
          PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

          -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
          2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
          BEP x 3 1/27/17
          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


          • #50
            Hoping things went well for your son MamaAng.
            Aug 2013: vague fevers, exhaustion, weight loss, night sweats
            September 2013: became a father
            October 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
            December 2013: cycle 1, VIP 3wks
            January 2014: cycle 2, VIP 3wks, became allergic to polysorbates
            February 2014: AFP 813, bHCG: 0, scrapped chemo
            February 2014: resection, upper left lobectomy, 7 x 6 x 5 cm tumor, teratoma / adenocarcinoma
            March 2014: AFP 70
            March 2014: AFP 19
            April 2014: AFP 11 !
            <fast forward>
            September 2014: surveillance, AFP < 12 for almost 4 years

            Comment


            • #51
              Hey there!! Thanks for asking. Surgery was last night and It. Went. Great!!!!! Less than 2 hour surgery, massive tumor the size of a large eggplant. Completely encapsulated and not attached to any structures. Lifted right out. Surgeon was thrilled. Now we wait for pathology but surgeon says everything looked good and he doesn’t expect any surprises. AFP was 13 last week. He’s in pain but they’ve already removed his chest tube, he’s up and walking , had pizza and a big dinner!! If he continues on this path he’ll come home tomorrow!!

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              • #52
                This is such great news indeed. So glad that the surgery went well. I hope he is wearing his dancing shoes for the December reception.

                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

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                • #53
                  That made my day. Hoping everyone can take a figurative, and literal in your son's case, deep breath and get some peace over the holidays.
                  Aug 2013: vague fevers, exhaustion, weight loss, night sweats
                  September 2013: became a father
                  October 2013: diagnosis PMNSGCT, ~5cm x 5cm, AFP: 43 bHCG: 0
                  December 2013: cycle 1, VIP 3wks
                  January 2014: cycle 2, VIP 3wks, became allergic to polysorbates
                  February 2014: AFP 813, bHCG: 0, scrapped chemo
                  February 2014: resection, upper left lobectomy, 7 x 6 x 5 cm tumor, teratoma / adenocarcinoma
                  March 2014: AFP 70
                  March 2014: AFP 19
                  April 2014: AFP 11 !
                  <fast forward>
                  September 2014: surveillance, AFP < 12 for almost 4 years

                  Comment


                  • #54
                    Hey everyone! Son is home less than 48 hours after the major surgery. He's got a HUGE incision down the mid-line and his sternum, wired together, will take nearly 2 years to heal. He went in at 5:15 pm on Tuesday and they prepared us for a long surgery and difficult recovery. We were shocked when the surgeon came out 90 minutes later! Had him in a chair 6 hours later, up and walking by noon. He ate pizza for lunch!!! He had a small Blake Drain removed around 7 pm after supper and they disconnected his IVs and started oral pain meds. Discharged him at 1 pm today and now he's home, showered and tucked in bed. He does have some pretty heavy pain meds which he takes regularly lol. So now we wait for pathology to determine if he goes into surveillance or requires more treatment. But the surgeon found "nothing abnormal" in his chest and also feels the large clot in heart is attached to the port catheter and may actually come out with the port. He also said the tumor was completely encapsulated and walled off from all surrounding structures although is was pressing on the aorta. It lifted out completely intact but he wouldn't speculate on what pathology will say.

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                    • #55
                      Good to hear. I think his incision will be faster than 2 years? Was it stapled, or actually wires? My RPLND scar (stapled) was pretty well healed up after 6 months.
                      6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                      6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                      7/7/15: bHCG 56, AFP 42, LDH 322
                      7/13/15 - 9/18/15: 4xEP
                      10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                      10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                      4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                      4/20/16: RPLND @ IU - teratoma only!
                      9/18/2017 all clears up to this date!

                      Comment


                      • #56
                        You're right. The incision will heal but the sternum will take 2 years to knit back together, according to the surgeon. The incision is stapled. The sternum is wired.

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                        • #57
                          Hi MamaAng, just read your story. So happy to hear that all is going well by the sounds of it. Hope you are on track for the huge wedding in December. As another TC Mum, I can understand what you have gone through. Stay positive - as you are now.

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                          • #58
                            MamaAng - So happy to hear everything is going well.

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