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My 17 year old son Grant had Post Chemo RNPLD Surgery Monday, 5/8/17

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  • #16
    BIWI~ they had no wound care listed. They do not even have RNPLd, they incorrect surgery listed. Grant is not riding his mountain bike, but he for mental reasons is going to camp. His Boy Scout Merit badges are not active ones except for geocaching.

    JOESMUM~ Did your son have his scan/bloodwork yet?

    CHEMIN~ Sorry to hear about your son's hernia. Grant is trying his best to not be overly active.

    NISH~ Grant's merit badge classes are mainly classroom. The only active one will be geocatching & walking is fine. His dad is an Assistant Scoutmaster & will be at the camp that week.

    UNO~ Thanks!

    Why did they change Grant's staging? All on his medical records from hospital is now says Stage 2C? Was it from the # of masses found and sizes excised during RNPLD? ***

    17 year old 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: pathlogy Teratoma , 3 large masses removed

    Comment


    • #17
      Could be for insurance reasons? Insurances are weird. I have a few suspicious lymph all under 2 cm and I had no blood markers but they wanted to go away with 3xBEP and not surgery so I figured that's why I was staged at 2B and not 2A even though from everything I've read it's textbook 2A. Insurances are weird with what they will allow. Maybe doctors just doing to to be safe?

      Comment


      • #18
        DCALANDRELLI~ Just reread where I saw it on recent hospital's medical records (different one from Children's Hospital). It is pathological staging- the masses found during RNPLD were more numerous and larger than viewed on post chemo CT Scans (2 post chemo).

        The Pedi Oncologist has Stage 3B, Urological Surgeon has 2B, now pathology says 3C.
        17 year old 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: pathlogy Teratoma , 3 large masses removed

        Comment


        • #19
          is further treatment required for Grant at this stage? how is he feeling? is he back to school?

          Comment


          • #20
            and no Joe didn't have the next check up as yet, we are due in early June....

            Comment


            • #21
              The staging can be a little tricky with assessing the pre-chemotherapy tumor marker levels and then the pathology from the RPLND will play a role as well. Perhaps there was a non-regional node involved or something? I can't remember what his tumor markers were prior to chemo. I would ask the doctors. However, I would no be overly concerned given that all looks great and the treatments a success. However, (a second time) higher staging could play a role for say future ability to get life insurance, so I would want to make sure it is correct in the records.

              Please send my congratulations to Grant.

              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

              Comment


              • #22
                MIKE~ Thanks for claryifying. It looks as though the pathlogy changed things with the size of the nodes. The surgeon after Grant's RNPLD 10 days ago said there was much more found than seen on CT Scans. Also, nowhere on the path report does it list # of nodes & I see that some seem to know how many nodes. It lists the different masses and sizes, and nodes within them. Even if I count all them up it is nowhere near the number I see others have mentioned.
                17 year old 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: pathlogy Teratoma , 3 large masses removed

                Comment


                • #23
                  Originally posted by Trekga View Post
                  MIKE~ Thanks for claryifying. It looks as though the pathlogy changed things with the size of the nodes. The surgeon after Grant's RNPLD 10 days ago said there was much more found than seen on CT Scans. Also, nowhere on the path report does it list # of nodes & I see that some seem to know how many nodes. It lists the different masses and sizes, and nodes within them. Even if I count all them up it is nowhere near the number I see others have mentioned.

                  Perhaps it is just a deficiency in the pathology report. It may be included in the operative report by the surgeon or if not, you may have to ask the surgeon. I would think that somewhere it should have been documented but perhaps not dictated for the reports.

                  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

                  Comment


                  • #24
                    MIKE~ The surgeon could not say on Wednesday, & it is not in the operative report, nor path report. It does say "possible lymph node bisected", but even if I count them, the number is much lower than I have seen listed. Instead the operative & path report refer to "masses".
                    17 year old 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: pathlogy Teratoma , 3 large masses removed

                    Comment


                    • #25
                      how is Grant feeling? thinking about the school camp as planned?

                      Comment


                      • #26
                        JOESMUM: Thank you for asking! Grant is doing so well, besides losing 10lbs since surgery. He has no appetite, and I'm forcing him to drink at least 1/2 a nutritional drink daily starting today. He had his port removed yesterday, and was outside running around with other teens in the neighborhood last night, and walked 3.5 miles this morning. Yes, he is off to camp on June 4th, he is only tkaing 3 Merit Badge classes and most scouts take 5-6 so he has a very light day.
                        17 year old 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: pathlogy Teratoma , 3 large masses removed

                        Comment


                        • #27
                          Good to hear. My appetite and bowl movements took 2-3 weeks to get back to roughly normal.
                          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!
                          5/10/17 all clears up to this date!

                          Comment


                          • #28
                            Good to hear!
                            24 year old diagnosed 6/11/16
                            Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                            Pre/o CT Clear
                            Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                            Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                            Post-op CT with one enlarged lymph node - 1.5x1cm
                            Borderline stage 2B/3B
                            BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                            CT and markers clear - in remission - 28/2/16

                            Comment


                            • #29
                              BIWI~ Thanks for chiming in, I think hearing from the hospital Oncology Nutritionist helped him realize he needs to eat, even it is very small amount.

                              NISH~ I think Grant is ready to practice driving so he may get his drivers license when he turns 18 (he wants to wait so he will have an unrestricted DL). I told him maybe this weekend.
                              17 year old 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: pathlogy Teratoma , 3 large masses removed

                              Comment


                              • #30
                                Very nice, just make sure he's ready with regards to reflexes, focus etc but sounds good. I left it till I was 23 to start driving, my insurance wasn't great... but it's different in the UK I think!

                                Good that he's thinking past it all now as he should be.
                                24 year old diagnosed 6/11/16
                                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                                Pre/o CT Clear
                                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                                Post-op CT with one enlarged lymph node - 1.5x1cm
                                Borderline stage 2B/3B
                                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                                CT and markers clear - in remission - 28/2/16

                                Comment

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