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my seond coming up

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  • surfhb
    started a topic my seond coming up

    my seond coming up

    I can't believe I am writing this but I just got back from the ER and they did an UltraSound and said there is a definite mass growing on my survivor. I did BEP x3 for 80% EC and 20% sem (I think) back in 2013 and have been fine since. I am seeing my surgeon/urologist Wednesday after the holiday first thing but the urologist on call that works with him seems to think they would want to look at a partial orchiectomy since it does look promising to him. The other part of my testicle is still squishy and normal. It isn't like my first one that it was all rock hard. I was also a stage 3 with a lump in my neck too though I guess.

    Well thanks in advance for the help. Happy New Year.

  • surfhb
    replied
    It is on the same side as my most recent TC 3 weeks ago.

    Leave a comment:


  • Davepet
    replied
    You indicated that this node was visible but smaller in 2017, so hard to say what is going on with it,which side is it on the same side as the first TC or the second?

    Leave a comment:


  • surfhb
    replied
    Thanks Dave. I’m not sure if you forgot but the reason for the RPLND is because this is my second time and I have 1 node that lit up on the pet/ct scan. I did BEP 5.5 years ago so this is a second not a recurrence or a clean up RPLND.

    Leave a comment:


  • Davepet
    replied
    I don't know the percentage, but my memory is telling me that it is rare for them to find anything other than necrotic or teratoma after 3xBEP. There's a good chance that even if they find TC, they will get it out & be done. Not sure what chemo might be needed if that is not the case, but the odds are improved by the surgery.

    Dave

    Leave a comment:


  • surfhb
    replied
    Does anyone know the chance of needing chemo after my RPLND next week? I’m starting to get worried that I’m gonna have to go through this surgery only to have to do chemo again. Dr. E wrote back and said we are on the right path and of course I would never doubt him. I just hate that it’s 100% EC and we are waiting 3 weeks for all of this.

    Leave a comment:


  • surfhb
    replied
    The case was sent to Einhorn. He replied

    “I agree with everything including your high regard for Mark Litwin. Agree of course with RPLND. Ultimate cure rate should be close to 100%.”

    Guess I’ve got my path mapped out for beating this once and for all.

    Leave a comment:


  • Davepet
    replied
    Originally posted by surfhb View Post
    Dave I guess it did light up that area or we maybe wouldn’t be having this conversation?
    Not necessarily, my understanding is that PET isn't particularly useful with EC, so a lack of it lighting up isn't a pass, but if it did,than you have a better indication that treatment might be needed. I would ask for a copy of the report or even a CD of the scan.

    Leave a comment:


  • surfhb
    replied
    Well UCLA and USC both say RPLND and on the west coast they are certainly expert centers. My oncologist spent time at Dana Faber for a few years also so she has the east coast connections. All saying RPLND and put an end to this.

    I guess I could email my information over and see what happens? What could it hurt but I do trust these people with my life and the work they have done thus far has been nothing short of perfect.

    If you are reading this Dr. Mark Litwin at UCLA is the man you want to see and my oncologist Dr. Alexandra Drakaki will both be the best doctors you have ever met.

    Dave I guess it did light up that area or we maybe wouldn’t be having this conversation?

    Anyone else?

    Leave a comment:


  • Davepet
    replied
    The size of your 9x11 mm lymph node suggests some further treatment, but only by 1 mm. I'd contact Dr E & see what he thinks. Did it "light up " in the PET portion of the scan?
    Last edited by Davepet; 01-28-19, 11:04 PM.

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  • surfhb
    replied
    Embryonal carcinoma 2.1cm tumor extends into rete testes lymphovascular invasion indentified. PT2 pNx

    Intensely FDG avid (SUVmax 7.4) left para-aortic lymph node measuring 9 x 11 mm concerning for metastasis. This has increased in size since 6/7/2017 when it measured 8 x 9 mm.

    Markers are still normal stage IIA so according to NCCN guidelines nerve sparing RPLND is the recommenders treatment.

    Once again my concern is 100% EC. They are saying the next steps are how much cancer they find.

    Leave a comment:


  • Davepet
    replied
    Originally posted by surfhb View Post
    The PET/CT came back with a possible spread to my lower abdomen. RPLND is on the table right now.
    What, exactly did the scan report find? A slightly enlarged node or something big? I woud consider an email to Doc E if there is any doubt about the need for further action.

    Leave a comment:


  • surfhb
    replied
    Well that’s what worries me about pure EC. Maybe I should just start chemo and finish this.

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  • Davepet
    replied
    Originally posted by surfhb View Post
    Both UCLA and USC recommend the RPLND and I may be able to get it next week.
    Sounds like you are in California, then, Just be aware that depending on path results of the RPLND, you may need more chemo going forward. Hope you don't.
    Dave
    Last edited by Davepet; 01-12-19, 04:21 PM.

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  • surfhb
    replied
    It is also 100% EC and last time it skipped to a node in my neck and I needed 3xBEP. My markers are still normal. Both UCLA and USC recommend the RPLND and I may be able to get it next week.

    Leave a comment:

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