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Waiting too long for RPLND?

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  • Waiting too long for RPLND?

    11/10/17: L I/O, HCG 9.9
    11/17/17: 50% Teratoma, 45% EC, 5% Yolk Sac, LVI +, CT Clear, Stage IB
    11/27/17: Tumor markers clear
    _________________________

    I had made up my mind to get the ra-RPLND at UofM but I was just informed today that they can't get me in for surgery until February 2nd... This is *almost 3 months after my I/O. Should I call IU to see if they can fit me in or should I opt for chemo?

    Healthcare is so frustrating...


  • #2
    I would definitely reach out to IU, maybe they can contact the UofM? Are they following your tumor markers? Hopefully, someone can ask. My son had his RPLND after chemo, so no experience with timeline.
    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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    • #3
      My surgeon told me 2 weeks ago that he was scheduling 30-45 days out for RPLNDs here in NJ. I tried to make an appt with Dr Foster at IU today, but they said he is on medical leave and may retire rather than come back.

      February 2nd is about 45 days from today so I guess U of M is on the outer edge of normal, but I would call around for alternate surgeons and try to get biweekly blood tests during that time to make yourself feel better. It's always better to make an effort and fail than to look back and regret you never tried. After 1+ years of tc, I know from experience.


      Partner to L
      Bulky seminoma
      Diagnosed 2016. 4XEP, 2xHDC, immunotherapy. No RPLND possible.

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      • #4
        First of all, IU has several surgeons that do RPLNDs and you would be in expert hands with any of them. Foster is a legend, but legends are for making movies. You just need someone who's damn good at that surgery, and they've got several. Also, IU is shockingly easy to schedule with. The doctors have secretaries that are super awesome and helpful and you can actually reach on the phone. If you are nearby and your insurance will pay (~125000$ if you'd have to pay in your own), I'd say that's the way to go. 4 months is definitely too long. What's the point of doing the RPLND? If you wait that long, you have already assumed a big chunk of the relapse risk. The whole point is to lower that risk.
        11/16/16 Went to primary care complaining of testicular pain. Wrongly diagnosed with epididymitis. Told not to worry, it'll go away on its own.
        12/8/16 Diagnosed with TC in left testicle.
        12/9/16 Left I/O.
        1/5/17 Tumor Markers officially back to normal -- Stage 1A with 70% EC.
        1/26/17 Robotic RPLND using left MSKCC template as primary treatment.
        2/2/17 Pathology results: pN0. They say I still have a 10% relapse chance.
        5/9/18 One and a half year all clear.

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        • #5
          Johns Hopkins also has a program where they have expedited RPLND. ​
          http://urology.jhu.edu/testis/cancer.php
          Age 31 - Portland, OR
          01NOV16- Pain in right testicle, palpable mass
          13NOV16- R I/O. Markers normal
          27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
          06DEC16 - CT scan clear
          09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
          03JAN17- Ended 1xBEP; start surveillance
          18MAR17-2nd pathology report shows 90% EC , 10% seminoma

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          • #6
            The guidelines are to do an RPLND within 4-6 weeks of previous CT scan. You could wait until February, but would likely need to have another CT scan done to reconfirm staging, and yes, you might miss the window of opportunity where an RPLND could be curative. Sorry to hear about Dr Foster on medical leave, but there are other doctors at IU that do the RPLND, so I would still pursue getting this done there.
            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
            C
            ONTACT ME ANYTIME!

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            • #7
              Thank you to everyone for responding! I wasn't hearing back from my in-state care team so I reached out to IU and they think they can get me in for surgery this week. Thanks for the guidance!

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              • #8
                Just a quick update: Had the RPLND on 12/22 and am still quite sore. I couldn't handle the percocets because they made me breath too shallow and I would desaturate. I have walked so much and drank lots of fluids but my bowels are still very sporadic. I am taking norco which helps a bit. I was hoping to be farther along by now but I am still incredibly sore. I'm doing my best to stay positive but this is a little harder than I anticipated. Yikes... Wish me luck!

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                • #9
                  Originally posted by DMac View Post
                  Just a quick update: Had the RPLND on 12/22 and am still quite sore. I couldn't handle the percocets because they made me breath too shallow and I would desaturate. I have walked so much and drank lots of fluids but my bowels are still very sporadic. I am taking norco which helps a bit. I was hoping to be farther along by now but I am still incredibly sore. I'm doing my best to stay positive but this is a little harder than I anticipated. Yikes... Wish me luck!
                  You are less than a week out from a very major surgery, it sounds like you are actually doing about as good as one could hope for! My bowels took at least a week to recover, probably a bit longer with the narcotics messing with them. The first week is definitely the hardest, things will start getting better faster soon.
                  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 - 9/18/15: 4xEP
                  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!
                  9/27/2018 all clears up to this date!

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