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It's a postchemo RPLND for me

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  • It's a postchemo RPLND for me

    I'll give you a potted history to date first of all.

    Diagnosed with TC on 7th March this year (embyonal, chorio, seminoma and teratoma), with 3 cm RP mass. AFP was about 550, and bHCG about 2600. Completed 3xBEP and markers normalised in a manner consistent with a good response to chemotherapy.

    After chemotherapy my mass had shrunk to about 2 cm, so they kept it under surveillance for 3 months to make sure that it wasn't just necrotic tissue that was going to dissapear over time.

    Well, that brings us to today. The mass has now shrunk to 1.2 cm, but the CT scan revealed that there was a less dense patch in the middle, and they believed it was likely becoming cystic with residual mature teratoma. They did consider leaving it another 3 months to see if it shrunk further, but they told me the best option was to now take it out.

    This was for two reasons. Firstly, if it was turning cystic, the operation would be much more difficult if the mass grew much larger in 3 months time, and secondly, in the unlikley event any live cancer cells remain at this stage they are most likely to be in the centre of the mass, and therefore the removal of the mass could be curative in its own right.

    Now onto the operation itself. I have many concerns about this surgery given it is very invasive. Now, I don't know if the surgeon was just going easy on me, but what he told me really did allay my fears.

    The surgeon has done nearly 400 postchemo RPLNDs and told me to forget everything I've read on the internet about 6 hour operations, as he'll have the mass out in 20 minutes. He'll poke around everywhere and remove anything as necessary, then close me up. He illustrated the size of the incision, which seemed to me about 8 inches.

    I queried this having read the stuff on the internet, and he explained that in some cases with a large mass the incisions and surgery would be a lot larger and longer respectively, but with only a half inch of residual mass, it was going to be very straight forward surgery. I'd also be home after 4-5 days and if I have a desk job could possibly return after 2 weeks. He also said with such a small mass nerve sparing should not be an issue and any complications were unlikely.

    How does this compare with those of you who've had RPLNDs for removal of a small mass?

    I was always really worried about the possibility of a RPLND, and whilst I still am, I just want the b*gger out now. If they find anything untoward then the surgery will be highly beneficial, and if they don't then at least I know in my mind that there's no cancer left in the node.

    I'm hoping this surgery will give me a degree of closure on this very difficult patch of my life.

    Diagnosed March 2006, Stage IIB, 3cm RP mass
    10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
    Prechemo bHCG-2648, AFP-582
    3xBEP March-June, markers normalised
    3 months postchemo - 1.2cm residual RP mass
    RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
    June 2009 - TRT commenced to help out my lefty
    May 2011 - check-up, all clear

  • #2
    No RPLND for me but many will post.... just wanted to wish you good luck with it and keep us posted.
    Good Luck
    5-1-2006 Right IO - Stage 1 Nonseminoma Embryonal and Yolk sac - Surveillance Baby on the way Born 7-20-07


    • #3
      Who's your surgeon? It sounds like you are in good hands. I was my doctor's first, he spared the nerves and everything works fine. It is a big operation, but as you will see, many of us have been through it and are alive and well. Plus, you get to add to your cool scar collection.
      TC 1
      Right I/O-- 12-5-00 (seminoma, teratoma, embryonal, yolk sak)
      RPLND-- 12-29-00 (All Clear)
      Recurrence-- 4-22-01 (3 mets in right lung-- biggest 3cm, small met on pancreas, one lymph node enlarged-- 2x normal)
      Chemotherapy-- started 4-30-01, 3xBEP
      TC 2
      Left I/O-- 7-19-06 (seminoma)
      Hormone replacement therapy-- Androgel

      Jeremiah 29:11
      Listen to Bob Marley


      • #4
        An RPLND is big surgery, but you should do just fine. Mine took about 5 hours, but that was in 1988, things have improved a bit since then. Back to work in 2 weeks might be rushing it a little. You do not want to over do it or tear your incision. I was too active an ended up with a hernia at the incision that eventually had to be repaired. So give yourself time to heal. It can take several months to fully regain your strength and endurance after this kind of operation. I'm glad your doc has done a lot of these procedures. Hopefull the tumor will be just scar tissue. Make sure you let us know how things go.

        Best wishes.
        Right I/O 4/22/1988
        RPLND 6/20/1988
        Left I/O 9/17/2003

        Tho' much is taken, much abides; and though we are not now that strength which in old days moved earth and heaven; that which we are, we are; one equal temper of heroic hearts, made weak by time and fate, but strong in will; to strive, to seek, to find, and not to yield.


        • #5
          My sons RPLND lasted about 3 and a half hours for residual teratoma that was showing up after four rounds of chemo...large incision and one week in Sloan Kettering...he had nerve sparring....and everything is great....good luck with everything...Mary Ellen


          • #6
            what hospital are you at?

            message to the original poster: can you let us know which hospital you are at?

            I am reading about how few RPLND's are performed at most institutions due to the rarity of the condition.
            pT1, nonseminoma (embryonal carcinoma, teratoma, yolk sac), S2 markers


            • #7
              I'm being treated in the UK.

              There's approximately 100 RPLNDs done in the UK each year - all of them post chemotherapy.

              With a population of 60 million, I guess that make me unlucky!

              Diagnosed March 2006, Stage IIB, 3cm RP mass
              10% Seminoma, 90% Non-Seminoma (Embryonal, and a tiny amount of choriocarcinoma and teratoma)
              Prechemo bHCG-2648, AFP-582
              3xBEP March-June, markers normalised
              3 months postchemo - 1.2cm residual RP mass
              RPLND September 2006 - mostly necrotic tissue plus tiny amount of well differentiated teratoma
              June 2009 - TRT commenced to help out my lefty
              May 2011 - check-up, all clear


              • #8
                My son had post chemo RPLND and it took a very skilled surgeon 7 hours. His operation was done by doctor Dr. Sheinfeld who performs more then 100 a year.
                At first glance it may seem unlucky but the RPLND may save your life. Luck might be a matter of perspective.
                Last edited by dadmo; 08-29-06, 10:01 PM.
                Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.


                • #9
                  I would definetly agree with taking it out when it is smaller .... I had my RPLND after chemo and salvage chemo and had a huge tumor removed... Due to the size and complexity of my surgery I was under the knife for 14 hours and lost a kidney in the process. Take the B*GGER out and then,as you said . you can close that chapter of your life and move on.... Best of luck to You .......BE WELL!!!!!! DON
                  Moffitt Cancer Institute
                  CANCER SUCKS
                  Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal Tumor@ 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--


                  • #10

                    I have just gotten through my RPLND and though it was not post chemo I can tell you that the surgery for me was worth it. Sounds like with an 8 inch incision that they are only going after the mass and not a full RPLND, true?
                    My RPLND was a full incision (sternum to well below belly button) and they had me up and around the first morning after surgery. The first night after the surgey even amid the drug induced haze i could tell that my rt side was tingly and a bit numb from all the action that was done inside. This subsided by the next morning. I had an epidural (around T5) as well as a dialodid button drip (4 mg every 8 minutes as needed). No food for the first 2-3 days (mine took a bit longer with intestinal problems) and the first bit of food was painful to eat for me. I got out of the hospital exactly 7 days after surgery and now am on day lucky number 13. I am really mobile now and the pain is a dull ache for the most part. I can walk anywhere just no heavy lifting, no running, jogging, etc. As well no s#x for a few more weeks (so they say).
                    Speaking of the intimate of intimates, there is the risk of retrograde ejaculate with a PRLND procedure however as this was explained to me the nerves center to this are predominantly on the left side so based on the side of your operation this can be less of a risk. As well this problem can correct itself in time if the nerve is not too badly damamged.

                    I would say move around as much as you can! if you can try to walk afterwards do it. It will be a bit painful but the movement will help every bit of you heal.

                    I hope this helps out a bit and I can be more specific if you like just let me know. I am pulling for the best for you!

                    Diagnosed 5/5/2006
                    RT IO 5/26/2006
                    Pathologic report 6/12/2006;
                    90% Teratoma / 10% Embryonal Carcinoma / 2% yolk sac
                    Pre surgery levels; ASP/HCG 863/451
                    6/26/2006; ASP/HCG 17/1
                    7/27/2006; ASP/HCG 5/<1
                    8/17/2006 Modified rt RPLND 26 nodes removed
                    8/22/2006 26 nodes reported cancer free

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