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Feeling lost- RPLND decision

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  • Feeling lost- RPLND decision

    Dear all, my boyfriend had intermediate risk tc cancer and got 4 BEP chemo and finished in april in France with 10% teratoma. 4th month follow up showed us a less dense "cystic" area next to kidney 2 cm and slightly enlarged nodes with normal tumor markers from 5mm to 1 cm in August. We sent the CDs to IU and they gave us the approximate cost. Our hospital arranged an RPLND for 9th of September, however the best doctor in France (Dr. Baumert) told us that he can take our file and he advise to be done by an experienced doctor. So we cancelled our appointment for 9th of September, however he still did not give us any appointment and we have been waiting for 6 weeks in total after the CT scan. And we have been waiting a date from Dr. Baumert for 2 weeks now and he wants to do it robotic. Since, the operation in US is financially difficult, Dr. Einhorn suggested us Dr. Albers in Germany. So we also have been trying to take appointment from them however the hospital wanted us to arrange via insurance and the insurance as well takes too much time ( almost 4 weeks and have not finished yet) and Dr.Albers does not give any appointment without the approval of insurance. In the mean time we are still trying to gather the money to cover all the expenses in US. However, me and my boyfriend feel lost. We don't know what to do. Wait a bit more to be operated in Europe or go to US instead of waiting. Could you please help us with your opinions? I am really lost within all these complicated procedures.

  • #2
    Hi. I hope you get your insurance for operation in Germany. Will your boyfriend have RPLND only or will he also have any of his organs removed?

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    • #3
      Hi TCfight,

      No matter how, you should not wait too long, when the tumor grows too fast, possible that it will press kidney, than he will loose it maybe.

      But you are really in a dilemma, I can understand. In Germany everything related to insurance, then it becomes automatic difficult. I guess it will take more time for lots of documents translate from Franchise to Deutsch. I have concern for waiting.

      I wish you could find your decision soon!

      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 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
        If tumor markers had been elevated at the time of his diagnosis and they're still normal now, that's a good sign that this is just the teratoma lingering. It's important to get it taken care of, but I would keep pushing and making phone calls every day to try to get the insurance through and your appointment setup in Germany. At this point you're also out of the 4-6 week operative window following a CT scan, so he'd need another set of scans prior to surgery also. I would say that if you can't get everything lined up by the end of this month, just go to IU. They're amazing, and can work with people on the financial aspects also. Good luck!
        Young Adult Cancer Survivorship by Steve Pake
        April is Testicular Cancer Awareness Month!
        www.stevepake.com
        Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
        My Survivorship Thread | All of my Blogs
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