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  • Ryan Bi
    started a topic RPLND Hospital advice

    RPLND Hospital advice

    Hi to all.

    My son finished his chemo BEPX3 on 7th January 2019. Today he had CT scans in Mayo Rochester, his urologist said , there is one abdomen node enlarged from 0.7cm to 1.1cm with tumor markers normal, my son needs RPLND.

    This is not surprising since I saw so many folks here took the same way, but now the problem is which hospital we should choose? Mayo or IU? Anyone knows Dr.Thompson( Huston Thompson)? My son is in the first semester of master , he has a job in the university, anyone could share information:how long can he back to study and work? Most time he just needs sitting .

    Many thanks in advance!

    Amy, Ryan’s mum

  • Ryan Bi
    replied
    Hi Joe,

    My son had only elevated bhcg. Er found out the Enlarged lymph node after BEPx3 one month later CTs. We visited Dr. Thomson at Mayo. He is nice Dr. I asked him how many RPLND were operated per year in Mayo, he told me , in total about two hundreds, and most patient were kidney cancer patient. That was the main reason I wanted to do RPLND at IU. I highly recommend you to do RPLND at IU when you really needed. My son had almost everything totally recovered.

    The pain mostly is low likelihood related to TC as Dave said. Since three months my son had strong back pain, he has to stop basketball playing for two months now. But it was really a bone island after bone scan check. I know how you feel and how anxiety you have.

    I think we have to deal with our mental problem harder than we think. TC is really a treatable disease. With stage 1, you should not worry too much in advance till you need. 90% the thinking is unnecessary. Because personally I am suffering the same.

    I will be glad if I can give you any help!

    Best wishes to you!

    Amy, Ran’s mom

    Leave a comment:


  • Davepet
    replied
    Everybody get the odd ache or pain, it's just that as a TC survivor, you can't help but try to connect the pains to your TC. This is almost never the case. TC is only painful when *extremely* advanced, so unless your most recent CT scan showed a very enlarged node, the odds are good that whatever pain you feel is not related to TC Hope this helps.
    Dave

    Leave a comment:


  • JoeG23
    replied
    Hi Amy or Ryan,

    I'm wondering if Ryan had any pain or discomfort in the abdomen prior to the RPLND? Also who at Mayo were you seeing? I live in Minneapolis.

    After my surgery I spoke with Aditya Bagrodia, urologist in Dallas, and he said he would recommend seeing Brad Liebevich at Mayo. Did you see Dr. Liebevich?

    I had my orchiectomy done at Methodist on Sept 30 of 2019 and had 30% Teratoma - Stage 1. I was given the option of 1xBEP or surveillance. I chose surveillance and my tumor markers have come down to normal with my last blood test on Nov 14. Though now I'm experiencing low back/abdomen pain on the side of my orchiectomy. I'm paranoid that it has spread and looking forward to my CT scheduled for Feb 4th. I also have the thought that it is just pain from poor posture being laid up in bed for a month.

    If tests come back positive would you recommend scheduling a visit at IU?

    Thanks for any advice you can share
    Joe

    Leave a comment:


  • biwi
    replied
    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.

    Leave a comment:


  • Ryan Bi
    replied
    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

    Leave a comment:


  • Ryan Bi
    replied
    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

    Leave a comment:


  • surfhb
    replied
    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.

    Leave a comment:


  • surfhb
    replied
    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.

    Leave a comment:


  • Ryan Bi
    replied
    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

    Leave a comment:


  • dcalandrelli
    replied
    Glad to hear the pathology report came back fine! Now you all can enjoy some much needed relaxation.

    Leave a comment:


  • Ryan Bi
    replied
    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

    Leave a comment:


  • Ryan Bi
    replied
    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

    Leave a comment:


  • Davepet
    replied
    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

    Leave a comment:


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

    Leave a comment:

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