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  • Husband's Diagnosis Presented So Differently

    Here is a little of our story. My husband found a large lump above his collarbone. Doctor said it is a supraclavicular lymphnode. Catscan showed it could be several things. Radiologists and doctors really thought it was lymphoma. To their surprise his biopsy showed extragonadal tumor. Another CT shows a clear abdomen...only some scattered nodes in the chest. We went to MD Anderson and after an ultrasound they found a small mass and a cluster of calcifications. He's not had any pain or swelling. Actually it seems to have gotten smaller. Doctor saw us today and he like the other doctors say this is presenting itself so strangely. They were actually glad to find something on the ultrasound with hopes it is the primary site. His levels aren't elevated. Only thing is LDH I think. He is having it removed tomorrow and we will know in about 7 days what it is. He is already getting a port next week and will be starting 3xBEP. I have been googling so much and lurking this site and don't seem to find anyone with a case like this. I have read it's a 4 to 5 % thing pretty rare but still haven't found anyone. Just curious of any insight you all have or if y'all have heard anything similar.
    Last edited by ShawnsWife; 05-31-18, 11:00 PM.

  • #2
    I am so sorry to be the 1st to welcome you to this forum. However, you have come to the best place that one can be if they are dealing with TC. We are one big family and there is a lot of collective knowledge here.

    MD Anderson ... are you in the TX area ? Just asking, because I am in Austin TX.

    Supraclavicular nodes do indeed get TC in them. Are they going to do an Orchiectomy to determine pathology of the testis or are they going to remove the node in the shoulder, or both ?

    My guess is that if TC, it will be a non-seminoma. They have a tendency to spread via the blood stream even at a low Stage. That can explain how it got to the shoulder area so fast. It's possible that the primary is indeed in the testis...but it may have "burned-out".

    Either way, you seem to be in a good spot. Obviously since it is in the supraclavicular node already it will place him at a higher Stage, but the cure rate will be about the same as if it were a lower stage.

    Keep us posted on what they find.

    - 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
    July 10th 2018: 4 YEARS ALL CLEAR !

    Comment


    • #3
      This place has already helped me tremendously. Very thankful for it.

      Yes we are at MD in Houston. Fortunately we live about 2 hours from there.

      The are doing the Orchiectomy today to determine pathology. We have only had an FNA done on the supraclavicular. The Doctor said chemo first and we'd see how much the neck mass shrunk and it was possible it might have to be taken out.

      I'm glad yo hear this doesn't sound so strange to someone else.

      I will definitely be updating. This site is going to be tremendous support for me.

      Thank you for responding.

      Comment


      • #4
        Well, it's definitely an abnormal presentation. Rare, but has been documented in the past. I know I have read one or two papers on case documentations like this before (supraclavicular presentations).

        3xBEP should cure it. Still, let us know what the pathology shows...it will drive treatments, options, and surveillance, etc. You are in good hands at MD Anderson. Plus it sounds like you are doing your homework in learning about this disease.

        Shawn will likely be spending his whole weekend on the couch. Hope he has movies and or video games, etc to keep him busy ! He'll be up and about sooner than you think.

        When does chemo start ? the 11th or the 4th or some other day ?

        - 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
        July 10th 2018: 4 YEARS ALL CLEAR !

        Comment


        • #5
          He will have his port placed on Tuesday. And we have an appointment with the Doctor Thursday. Will find out then what day he starts. We are able to do treatments closer to home, rather than traveling or staying in Houston. MD doctor will be directly working with our Doctor nearby.

          Could you help us understand the schedule of BEP? Is it daily 5 days in a row for two weeks in a row then a rest week? How many hours at a time? They are going to explain to us Thursday but thought I'd ask here.

          Comment


          • #6
            A single cycle of BEP is 3 weeks.

            The 1st week consists of getting chemo Monday - Friday. Expect to be there for 5-7 hours. Cisplatin and Etoposide will be given on all five days. Bleomycin (Bleo) will likely be given on either Monday or Tuesday. This week you get not only the chemo drugs; but all the hydration and anti-nausea meds, steroids, etc. Most of us called the 1st week of each cycle the "long week".

            The 2nd week he will only get Bleo....again either on Monday or Tuesday

            The 3rd week is identical to the 2nd week...Bleo only.

            So weeks two and three are the "rest and recover" weeks.

            - 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
            July 10th 2018: 4 YEARS ALL CLEAR !

            Comment


            • #7
              I had one enlarged superclavical node at diagnosis. Not huge, but you could feel it was larger. But I also had nodes that were visibly enlarged in my abdomen on CT. 4xEP took care of almost all of it, I did need an RPLND 6 months later for one node that had teratoma that increased in size after chemo. All clear now. see my signature.
              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!
              3/29/2018 all clears up to this date!

              Comment


              • #8
                @JeskiM69. Thank you for the info. We just wanted to know a little better what we were looking at.

                @biwi I think that's why they've been a little shocked with his is because his abdomen showed clear. I was interested in seeing your signature but it's not showing.

                Comment


                • #9
                  So the biopsy came back from the orchiectomy and it showed "seminoma with surrounding scar tissue consistent with a burned out nonseminomatous germ cell tumor and is consistent with his neck mass showing metastic embryonal cell carcinoma".

                  I get a little confused by the seminoma and non. I thought it was one or the other. Also does this mean it is 100 % embryonal? Just curious as this was a posted result and we haven't discussed in person.

                  Shawn got his port placed Tuesday. He starts chemo Monday at 8:30. Having mixed emotions of hating to have to start this journey but ready to kick this cancer's rear.

                  Comment


                  • #10
                    Mixed cell tumors are quite common actually. The chemo should take care of any cells that have spread, so that is definitely the right mve.

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

                    Comment

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