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Concerned Mother - Son diagnosed with TC

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  • Concerned Mother - Son diagnosed with TC

    Hi, my son was diagnosed with TC and underwent an oriechtomy (right testicle) 5 months ago. CT scan shows enlarged lymph nodes near vena cava; now they are recommending RPLND. Has anyone had this surgery performed at the University of Pennsylvania and who was the surgeon? I want to find out who would be the best doctor to perform the surgery. Please share.

  • #2
    It sounds unusual to me to treat a 5-month out relapse by RPLND. Was your son's tumor entirely teratoma? First things first. Double check that an RPLND is the right thing to do here. If it is, get the most experienced surgeon you can. If your insurance allows, consider traveling to IU or MSKCC. I don't know anything about U Penn. Sorry I can't help there. Best if luck!
    11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
    12/8/16 Diagnosed with TC in left testicle.
    12/9/16 Left I/O.
    1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
    1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
    2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
    5/9/18 One and a half year all clear.

    Comment


    • #3
      Our friends at the TCRC have an experts list at: http://tcrc.acor.org/experts.html

      If it were me, I would contact Dr. David Vaugh and see who he recommends for an RPLND and if an RPLND is the way to go. Without details it is difficult to tell as far as how many nodes, the sizes of the nodes and if your son is having any symptoms (abdominal or back pain). Those details kind of factor in if an RPLND or chemotherapy is preferred. I would also ask hoe many RPLNDs the doctor does. The higher volume centers the better and i just do not know how many they do or sho does them. I would also look into IU or Memorial Sloan-Kettering if I had to means and ability to do so.

      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


      • #4
        Welcome from another mom...Mike's right about Dr. Vaughn being your go to guy at Penn. My son is with Dr. Abass at Fox Chase for his surgery next week. I also think you should reach out to Dr. Einhorn to see if he concurs. Then you'll know if you're going in the right direction. leinhorn@iu.edu

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        • #5
          Sorry to welcome you hear. Everyone has provided great suggestions going by the information you provided. I am assuming your son had the tumor removed, than placed on surveillance for the past 5 months, than had a CT Scan recently show the nodes. Deep breath mom, several of us are here for our sons.
          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


          • #6
            Thank you all for you responses. I don't have all of the details but this is what I do know.
            28 year old son Christopher dx 04/2017
            no elevated HCG or AFP
            pre/o CT scan normal
            r/o 4/28/17
            Pathology non seminomas germ cell 99% teratoma 1% embryonal
            2nd ct scan 09/2017 enlarged lymph node 2 cm in peritoneal cavity (near vena cava)
            Still no elevated HCG or AFP
            Recommending RPLND within next 2-3 weeks.

            Have left a message with Dr. Einhorn for 2nd opinion. (Thanks for the link website Mike - awesome info!)
            Current Oncologist Dr. David Vaughn at Penn (excellent oncologist)

            Looking for feedback on Dr. Guzzo the recommended surgeon.
            Anyone?

            This is an awesome resource network! So glad I found it.
            Thank you everyone for your words of hope, I couldn't go through this without all of you.

            Comment


            • #7
              MamaAng - sending prayers your way for your son.

              Comment


              • #8
                Curious to see what Dr. E says, but with high % of Teratoma, no raised markers, and initial clear CT Scan, than probably RPLND. Hoping someone can chime in about Dr. Guzzo.
                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


                • #9
                  RPLND is the only choice here. Seems like you're in good hands. I'm confident Einhorn will say the same.
                  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


                  • #10
                    I agree with the others, with that high a percentage of teratoma, he needs an RPLND at this point. While teratoma is not normally considered to be malignant (ie, cancer) it can transform. Here is what the Testicular Cancer Resource Center dictionary ( http://tcrc.acor.org/dictionary.html#GlossT ) has to say about teratoma:

                    [QUOTETeratoma] - (1) Strictly speaking, teratoma is a benign growth. It is an odd sort of tumor in that it is basically composed of a number of different normal types of tissue, growing in abnormal places. I say strictly speaking it is benign, but it can act like a malignant tumor and spread. It is most commonly discussed in the post-chemo situation where the doctors want to remove masses left behind by the chemo because they may have teratoma in them. They do this because any tumor can grow and cause problems later on, plus teratoma tumors can become cancerous themselves, and those cancers are not as easy to treat as germ cell tumors. Because teratoma is made up of normal cells, chemotherapy does not affect it. (2) In the UK, teratoma is synonymous with nonseminoma. Here is a cross reference between the AFIP/World Health Organization and the UK classifications: [/QUOTE]
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Hey Denise,

                      I'm sorry to have raised the question to begin with. As most NSGCTs are not comprised of almost entirely teratoma, it sounded like a strange step to me to go to RPLND at 5 months out. Of course, knowing that it was 99% teratoma, it seems you're doing the right thing. Once Dr. E confirms, you can sleep well at night knowing you're doing the right thing. RPLNDs are tough surgeries, but you and your son will get through it, and I don't think it's as bad as chemo.

                      Again, sorry I can't offer any help on finding the right doc for your RPLND. I'd suggest actually talking to this Dr. Guzzo. Before I talked to my surgeon, I didn't think he was qualified due to not enough cases of TC (my urologist had suggested going somewhere else). I then learned that he's a big expert on surgery for kidney cancer, which often involves removing the same lymph nodes. He said he does several of those each month, and I decided that he was great, and he did give me great care. Also, if Guzzo's not 100% confident, I'm sure he can tell you the best surgeon around for RPLND. Don't be afraid to ask him directly if he is THE best RPLND surgeon available. Nobody will begrudge a mom trying to get the best care possible for her kid.

                      -Uno
                      11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
                      12/8/16 Diagnosed with TC in left testicle.
                      12/9/16 Left I/O.
                      1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
                      1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
                      2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
                      5/9/18 One and a half year all clear.

                      Comment


                      • #12
                        Thinking of you and your son!
                        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


                        • #13
                          RPLND surgery performed at University of Penn on 11/20; son, Christopher, home on Thanksgiving - amazing! Awesome surgeon - Dr. Guzzo. Going for follow up today and biopsy results. Fingers crossed and prayers needed. I have Chris following a no more than 5 gram of fat/day diet. How long do we have to do this diet? Anybody?

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                          • #14
                            Best of luck and let us know!!!

                            Comment


                            • #15
                              Hello, Congratulations on a successful surgery!
                              My son had RPLND at IU. He was never put on a fat restriction. The only advice from Dr. Foster was small meals. He told him to eat whatever he wanted and could tolerate.
                              9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2018.

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