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  • #16
    Glad the surgery went OK. I know it is relatively common to have internal lymph fluid leakage after RPLND, and they will know how to handle it. One of the perks of going to a high volume center.

    Hmm, We stayed at candlewood and it was part of the procare network then, but that was in 2016, and maybe they were not very full.

    Yeah, they definitely get you up and moving quickly, no sitting around. I remember the pain was definitely the worst in the first 3-5 days, after that is rapidly got better.
    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: begin 4xEP, end 9/18/15
    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!
    10/22/19: all clears up to this date!

    Comment

    • #17
      Hi to everyone.

      Update of my son after RPLND, pathology report came back with 1 from 57 lymph nodes confirmed Teratoma.But size is not 1.1cm, it is 2.8cm. Further treatment doesn’t need. Abdomen distention is still there, Ultrasound showed some fluid is inside, but the doctor said it is normal after RPLND, it will last another 7-10days. Let's see.

      Now my son is in remission and next follow up is in August.

      I feel a little bit relax now, hope everyone here can also have a nice weekend!

      BRs

      Amy, Ran’s Mom
      Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

      08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

      Comment

      • #18
        So great to hear the good news.
        Last edited by surfhb; 03-24-19, 06:14 PM.

        Comment

        • #19
          Originally posted by S P View Post
          PET is non-standard care and not clinically indicated for any non-seminoma TC patients. .
          I had a mixed cell tumor & my onc ordered a PET/CT that clearly removed the doubt that the CT only scan had left. The ct only was kinda inconclusive, even though it suggested an oversize node. Even though all the docs currently are not convinced, I suspect that PET/CT will become the scanning tool of choice in the future. It shows everything the CT does, plus a bit more. Medical technology is a moving target, & always should be.

          Dave

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

          Comment

          • #20
            Thank you, surfhb. Now waiting for your good news. When will your Chemo start? I wish you of good luck!

            All will be good eventually!

            BRs

            Amy, Ran’s mom
            Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

            08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

            Comment

            • #21
              Thank you, surfhb. Now waiting for your good news. When will your Chemo start? I wish you of good luck!

              All will be good eventually!

              BRs

              Amy, Ran’s mom
              Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

              08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

              Comment

              • #22
                Glad to hear the pathology report came back fine! Now you all can enjoy some much needed relaxation.
                3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 6/02/22 All clears up to here! 5 years all clear! Son due October 2022, conceived naturally!

                Comment

                • #23
                  Thank you dcalandrelli.

                  Yes, now I am relax a lot. But I started to worry about next check up. I know I shouldn’t, perhaps no one can really get rid of thinking of TC, time can make it better!

                  Have a nice Sunday evening!

                  Amy, Ran’s mom
                  Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                  08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                  Comment

                  • #24
                    Originally posted by Davepet View Post
                    I had a mixed cell tumor & my onc ordered a PET/CT that clearly removed the doubt that the CT only scan had left. The ct only was kinda inconclusive, even though it suggested an oversize node. Even though all the docs currently are not convinced, I suspect that PET/CT will become the scanning tool of choice in the future. It shows everything the CT does, plus a bit more. Medical technology is a moving target, & always should be.

                    Dave
                    I agree 100% with this Dave. When things are too close to call I would want the PET/CT done. In my case it identified nodes that were within normal range to be removed for RPLND.

                    Comment

                    • #25
                      Originally posted by Ryan Bi View Post
                      Thank you, surfhb. Now waiting for your good news. When will your Chemo start? I wish you of good luck!

                      All will be good eventually!

                      BRs

                      Amy, Ran’s mom

                      I am complete with EPx1 right now. Final EP in 7 days. Then I’m done.

                      Comment

                      • #26
                        Hi wielandk,

                        I think I missed to thank you for your input, that gave me so much confidence. Now my son is already done with RPLND, recovery is slowly but everyday getting better.

                        I wish you and your son all the best! Really appreciate your comment!

                        Best regards

                        Amy ,Ran’s mom
                        Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                        08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                        Comment

                        • #27
                          Hi surfhb.

                          Now time will run fast, happy to hear in 7 days you will it done! I am sure you will beat it! Take care!

                          BRs

                          Amy, Ran’s mom
                          Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 [email protected] Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                          08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                          Comment

                          • #28
                            Happy to hear only teratoma was found. Yes, I found that almost every day was better than the previous when recovering from RPLND. Occasionally there may have been 2 days in a row where I felt the same, but overall he should be rapidly noticing improvement.
                            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: begin 4xEP, end 9/18/15
                            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!
                            10/22/19: all clears up to this date!

                            Comment

                            • #29
                              Originally posted by surfhb View Post

                              Protocol for UCLA is pet/ct scan SP. maybe just a different opinion of care management. Just had mine done a few weeks back which was the reason for RPLND and the areas that light up did come back positive for 100% EC. In my case the PET/CT nailed it right on and they hope I will avoid chemo this way. This process was also sent over to IU in which Dr. Einhorn agreeded 100%.

                              Maybe this was the case a few years back but in both my cases of Nonsemomina 2013 and 2019 a PET/CT was used multiple times.
                              In the case of my son, it was also discovered that he relapsed at the age of 2 in the other testicle thanks to the PET/CT. We were told that it is not recommended for non-seminomas but in the one of the if it came out and is more, embryonal carcinoma was discovered in the orchiectomy of the second testicles and 4 nodes, the largest of 17 mm
                              He had to do another line of chemotherapy EP X 4 (2 years ago he did BEO X 3 and now again the PET reported a nodule of 7 mm that seems sequelae, and no more metabolic activity in any other node
                              According to Dr. Heihorn, I would do surveillance and if it is enlarged again if RPLDN, we will see tomorrow what your oncologist thinks in our country. any similar case? or any opinion be appreciated, thanks!

                              Comment

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