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RPLND advice, encouragement and wisdom needed

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  • #1

    RPLND advice, encouragement and wisdom needed

    I recently completed 3 rounds of BEP chemo for a mass in my abdomen. And we thought the battle was over (shrunk from 9cm to 2cm). However, within 2 months, them mass is up to 5cm and showing a very high SUV rating (21) on the PET scan.
    Anyways, I am being told that I will need an RPLND surgery within the next 2 weeks. And I am going to have it done at IU. But could really use some advice or suggestions going into this surgery from anyone that has been through it already. Thank you in advance for the help!
    Tags: rplnd, seminoma
  • #2
    I got mine done on February 4th. You are at an amazing center of excellence where there shouldn't be any complications and if there were they know what to do. Do a search for my name and I just wrote out some long instructions for a different forum member about my experiences. Tomorrow I will officially be 3 weeks out and I was back to work last week and driving around 10 days after the surgery. I was so scared to get it done but it wasn't half as bad as I thought it would be. You can do it.
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    • #3
      My son is going to have RPLND in IU as well. Seems around 12th or 14th March. He has one lymph node up to 1.1 cm after Chemo. Best wishes to you. Good luck!

      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 2019@IU 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
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      • #4
        Ibathel-While this is a tough surgery, IU is so good at this procedure and process that it should go smoothly for you and you can hopefully be cancer free very soon. I am so glad you can go there.If you have supporters who will be with you, I highly recommend the Candlewood Suites which is very close to the hospital and has a free shuttle and low rates. It is not high end, but clean and spacious for your caregivers. My son checked in to the hospital on Thursday am and out Sunday am. We stayed in Indi until Tuesday morning and then drove 7 hours to home. Received the pathology on Monday late before we left. My son stood up in a wedding for one of his best friends two weekends later. (This was a little dicey though, but he made it.) Went back to work (desk job) in three weeks. You will be on the other side before you know it! Best wishes-

        Kat, Mom of Jacks
        June 2018 – I/O right testicle, Pre-surgery HCG = 257, AFP = 15
        June 2018 – Path = 95% EC, 5% Tert & FYS, Stage III-A
        Aug 2018 - Completed BEP x 3, Post-chemo HCG = 8, AFP = < 1.5
        Sept 2018 – RPLND @ IU

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        • #5
          Hi Kat,

          Thank you so much for your advice. It is always very helpful for me!

          I will check the Candlewood Suites right now, hopefully I could find it!

          I wish you and your son all the best!

          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 2019@IU 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
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          • #6
            Definitly get yourself a bathrobe and slippers. They are going to want you to be walking around as much as possible and you don’t want to do it in a hospital gown and hospital socks.

            I brought a 3 gallon water jug to drink as much fluids as possible once they allowed me too. iPad is always good to have also. Face wipes to freshen up for doctors and visitors.

            You will seriously cruise through this. I liked a winter hat also. Kept my head warm as parts of the hospital especially before surgery were very cold in only a gown.
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            • #7
              Many have posted about their IU RPLND experience, it is a popular place and they know what they are doing.

              As for hotels, IU has a "procare network" that gives discounted rates for patients and family. See the list and some rates here: http://www.procarenetwork.com/Hotels...elStarList.asp
              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!

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              • #8
                Thanks a lot, biwi.

                This link if helpful at this moment!

                Thanks

                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 2019@IU 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

                • #9
                  IU is top notch center!!! Great suggestions for places to stay. Walking ASAP afterward is key.
                  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.

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                  • #10
                    So I met with Dr. Einhorn at IU today to discuss my surgery (RPLND) that was supposed to happen this Thursday. However, a CT scan revealed that my abdominal mass is growing and potentially moving into another lymph node. Therefore, Dr. Einhorn seemed to think that an RPLND would no longer be a good solution.
                    He recommended doing high dose chemotherapy instead. Does anyone out there have any experience with this? If so, any suggestions, encouragement or advice would be greatly appreciated. Thank you.

                    Comment

                    • #11
                      I don’t have experience on the high dose so I can’t comment there. All I can say is that you have the best team possible that will get you through this. I’ll be following along. Keep us updated please. Hopefully someone can comment on the HDC.
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