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  • #31
    Hello Trekga. The las time I emailed Dr Einhorn I told him about the aortocaval lymp node, he answered to me that its impossible to tell just by email and was probably of no concern. So it wasnt helpful. He might not understand my wording or something

    So How should I email Dr Einhorn should I be brief or very specific?
    39 year old diagnosed Right Mass as per U/S
    Pre/o CT-Scan Chest Xray all Clear march 24 2017
    Right I/O April 8th 2017
    Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
    Tumor Markers never elevated
    Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
    May 11 BHCG Mild elevated 3.1 Reference Value 2.7
    May 25 2018 Chest CT-Scan Clear
    May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

    Comment


    • #32
      I am a bit confused? I thought that they were going to re-do the CT scan in 7 weeks, and that was from the end of January? Is this the first abdominal imaging you have had since January?

      To be honest, I am not sure how the CT vs MRI relate and the chances for errors with MRI, etc. but a growth of 18mm to 35 mm seems significant in my mind. On the other hand the increase of beta-hCG seems of no significance and most likely just slight variations in the lab tests themselves. Having an ultrasound of the left testicle doesn't seem unreasonable just for peace of mind. I used to get one yearly.

      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


      • #33
        Mike, yes it is the first abdominal imaging since Januray 27. The Oncologist asked for another abdominal CT-Scan, but my Urologist said it was too much radiation to that area. So Urologist said that MRI would be enough to see if the Lymp node was still there and I will avoid the CT-Scan radiation, and if MRI was not clear enough then he would definitely order a new CT-Scan to my abdomen. So what we agree with the Urologist was to get the abdomen MRI and not a bad idea to get the Chest CT-Scan since I never had a Chest CT-Scan before only had two Chest Xray.
        Last edited by mauroeg7; 07-08-18, 12:19 PM.
        39 year old diagnosed Right Mass as per U/S
        Pre/o CT-Scan Chest Xray all Clear march 24 2017
        Right I/O April 8th 2017
        Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
        Tumor Markers never elevated
        Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
        May 11 BHCG Mild elevated 3.1 Reference Value 2.7
        May 25 2018 Chest CT-Scan Clear
        May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

        Comment


        • #34
          OK, I understand now. I think that I would be concerned with a doubling in size over the time period. If it was close in size then perhaps I would be less concerned but that is a significant difference.

          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


          • #35
            I don't understand how the urologist can over ride an order for a CT from the oncologist? Yoir oncologist shoiuld be in control of your TC care at this point. I wouldwant to compare a CT to a CT before proceeding with further treatment.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #36
              Originally posted by Mike View Post
              OK, I understand now. I think that I would be concerned with a doubling in size over the time period. If it was close in size then perhaps I would be less concerned but that is a significant difference.

              Mike
              The strange thing is that another Urologist that saw the first CT-Scan imaging from January 27 on his PC said that he finds it bigger than 18x14 mm. He said: what my PC software is showing actually measures 32mm instead of 18x14 mm. But He said Im not a radiologist but its what I see
              39 year old diagnosed Right Mass as per U/S
              Pre/o CT-Scan Chest Xray all Clear march 24 2017
              Right I/O April 8th 2017
              Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
              Tumor Markers never elevated
              Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
              May 11 BHCG Mild elevated 3.1 Reference Value 2.7
              May 25 2018 Chest CT-Scan Clear
              May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

              Comment


              • #37
                Originally posted by Davepet View Post
                I don't understand how the urologist can over ride an order for a CT from the oncologist? Yoir oncologist shoiuld be in control of your TC care at this point. I wouldwant to compare a CT to a CT before proceeding with further treatment.
                Well He didnt override the order for the CT-Scan. I called him and he told me I would recommend to get an MRI instead of a CT-Scan to avoid radiation in your abdominal area. MRI could be enough to check on the aortocaval lymp node progress if it fails to do so, then go ahead and get the CT-Scan. But since the MRI is showing the node is 35mm. Then urologist had a meeting with other doctors including oncologists and urologists where he discussed my case, and agree that chemo should be started. The last words my Urologist said was get to my office to get an order for al ultrasound and go see an Oncologist. And I followed his recommendation about an MRI since that Uro is my treating doctor he did my I/O and my surveillance has been with him so far.

                Actually I saw different doctors to get a second opinion but after visiting a few doctors offices I decided to get back to my original Urologist as advised my mom and some relatives. The doctors I saw all had different opinion, one said get a PET Scan, another advised me to start 15 sessions of radiotherapy to get rid of the node, one more said you need Chemo but I will not start any treatment until you get a Chest CT-Scan which you haven had so far. And the last oncologist that ordered the abdominal CT-Scan also mentioned that if lymp node was still there the best thing to do would be surgery to get it out and have it checked by pathology. But I think its time for an Oncologist to be in control

                I would like to get to the doctors in my country who are experts on TC, I know my Urologist has treated more TC patients but dont know the outcome with them
                Last edited by mauroeg7; 07-08-18, 03:59 PM.
                39 year old diagnosed Right Mass as per U/S
                Pre/o CT-Scan Chest Xray all Clear march 24 2017
                Right I/O April 8th 2017
                Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                Tumor Markers never elevated
                Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                May 25 2018 Chest CT-Scan Clear
                May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                Comment


                • #38
                  Originally posted by mauroeg7 View Post
                  The strange thing is that another Urologist that saw the first CT-Scan imaging from January 27 on his PC said that he finds it bigger than 18x14 mm. He said: what my PC software is showing actually measures 32mm instead of 18x14 mm. But He said Im not a radiologist but its what I see

                  Perhaps having the January CT re-read by a different radiologist would be a good idea before jumping into things?

                  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


                  • #39
                    Hello
                    I saw an oncologist he was young for an oncologist about 41, and he said he is not going to order any chemo treatment, surgery or anything until he finds out the abdominal aortocaval node it's actually TC. So he ordered some PET Scan. Not sure if a Pet Scan is appropriate at this point or not, so I'm looking for a second opinion from another oncologist. There is one oncologist who has a good reputation in this country but he is on vacations so my appointment with him was scheduled for August 27th. Meanwhile, I'm looking for another good oncologist since waiting until the 27th seems like too much....
                    Last edited by mauroeg7; 08-01-18, 05:09 PM.
                    39 year old diagnosed Right Mass as per U/S
                    Pre/o CT-Scan Chest Xray all Clear march 24 2017
                    Right I/O April 8th 2017
                    Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                    Tumor Markers never elevated
                    Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                    May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                    May 25 2018 Chest CT-Scan Clear
                    May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                    Comment


                    • #40
                      Where are you from?

                      Comment


                      • #41
                        Originally posted by Sergyo View Post
                        Where are you from?
                        Hello Sergyo

                        I´m from Colombia
                        39 year old diagnosed Right Mass as per U/S
                        Pre/o CT-Scan Chest Xray all Clear march 24 2017
                        Right I/O April 8th 2017
                        Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                        Tumor Markers never elevated
                        Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                        May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                        May 25 2018 Chest CT-Scan Clear
                        May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                        Comment


                        • #42
                          Hello

                          Just updating what Dr. Einhorn replied to my email today

                          From: Einhorn, Lawrence <leinhorn@iu.edu>
                          Sent: Thursday, August 16, 2018 6:37 PM


                          "Recommend BEP X 3 chemo, assuming you are under age 50 . Expected cure rate 99-100% ."


                          I'm scheduling an appointment to see an Oncologist next week and see if the Oncologist matches Dr. Einhorn opinion

                          I was kind of confused whether doing or not first an RPNLD in order to removing the 35mm aortocaval node

                          I read somewhere it could be a better to do RPNLD first and then if there still seen in the Ct-Scan or PET imaging, then chemo cycles should be start to clean up whatever is still there. I heard that RPNLD is tougher after Chemo because of how sticky our innards can become after chemo treatment

                          However I think it would not be easy finding an experienced skilled surgeon in this country. Not sure if there is someone here who the procedure laparoscopic or robotic. The Urologist I saw today recommended also Chemo and said he can only do it full open ​RPNLD

                          So seems like Chemo is the way...!



                          39 year old diagnosed Right Mass as per U/S
                          Pre/o CT-Scan Chest Xray all Clear march 24 2017
                          Right I/O April 8th 2017
                          Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                          Tumor Markers never elevated
                          Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                          May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                          May 25 2018 Chest CT-Scan Clear
                          May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                          Comment


                          • #43
                            It's hard to go wrong following Doc E, he wrote the book on treating TC.
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #44
                              Okay...usually they do not perform RPNLD on pure seminoma, at least that is what I understand. So yes chemo, 3xBEP seems likely. I agree with Davet, Dr. Einhorn is the man to defer to in almost all TC situations.
                              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


                              • #45
                                Originally posted by Davepet View Post
                                It's hard to go wrong following Doc E, he wrote the book on treating TC.
                                Originally posted by Trekga View Post
                                Okay...usually they do not perform RPNLD on pure seminoma, at least that is what I understand. So yes chemo, 3xBEP seems likely. I agree with Davet, Dr. Einhorn is the man to defer to in almost all TC situations.


                                Thank you Dave, Trekg, I saw an oncologist last month he said I might need 4xBEP or 4EP and the urologist I saw yesterday said the same thing 4XBEP

                                Iam looking forward to see another oncologist next week, Iam dealing with high level of anxiety..
                                Last edited by mauroeg7; 08-17-18, 03:21 PM.
                                39 year old diagnosed Right Mass as per U/S
                                Pre/o CT-Scan Chest Xray all Clear march 24 2017
                                Right I/O April 8th 2017
                                Path report 100% Pure Seminoma Tumor Size 2.5cm x 1.3cm no invasion/surveillance decided
                                Tumor Markers never elevated
                                Chest Xray clear Ct-Scan January 28 2018 shows 18x14 mm aortocaval node.
                                May 11 BHCG Mild elevated 3.1 Reference Value 2.7
                                May 25 2018 Chest CT-Scan Clear
                                May 31 2018 MRI showing aortocaval node is now 35mm, everything else clear

                                Comment

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