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  • Post Chemo RPLND

    Hi all,

    I provided a brief update in one of my other threads but I thought that I would go ahead and open a new topic on PC-RPLNDs.

    I was diagnosed with a mixed, NSGCT back in early June 2020 following a right Orchiectomy. At the time I was staged at IIB as I had elevated tumor markers, a few RP enlarged lymph nodes and LVI noted in pathology following the Orchiectomy. Following the NCCN guidelines and my doctor's advise, I went ahead with 3xBEP, in late June 2020, as a primary RPLND would only have made sense if I had negative/normalized tumor markers.

    Chemo was better than I had expected but nonethessless rough. I had no serious complications other than a brief allergic reaction to etoposide in my 3rd cycle, and an incredible amount of water retention during each full week of BEP. The water retention was dealt with using IV diuretics and two plastic urinals as I was sent out the door on the Friday of treatment. My change in weight due to water retention was 20+ lbs which was frankly pretty uncomfortable. (I felt like the Violet character from Willy Wonka.) I'm happy to report that other than a bout of strep throat which made me miss a Bleomycin injection in Cycle 2 that I didn't have any other neutropenia and I only have had mild anemia following chemo. While the run of the mill side effects like numbness in fingers and ringing in ears occured during chemo, I don't particularly notice those side effects a month after. As a matter of fact Im back up to running several miles a week.

    A month after I finished chemo, I had my first CT checkup and another set of blood markers. AFP finally dropped to 11, bHCG < 1 and the LDH has been hovering somewhere around 250. The CT scan revealed that the original enlarged lymph nodes grew from a maximum of 2.3cm to now 3cm. The urologist and oncologist both agree that Teratoma is likely present but they do not want to rule anything else out. They've recommended that I have an open, PC-RPLND performed as soon as possible. So, the plan is that I go into surgery in two (2) weeks. The urologist anticipates that it will be about a 3-4 hour surgery where they indeed to perform close to a bilateral template with a focus on the left side. Recovery time in hospital should be about 5 days. They expect I'll be out of work for about 2-3 weeks in total but that sort of depends on how the surgery goes. Biggest risk for this RPLND is the ability to nerve-spare because of the 'low" location of the nodes. As a 28M I'm really hoping they are able to nerve spare and prevent anejaculation; however, I was able to fortunately undergo fertility preservation prior to my Orchiectomy.

    I would love to hear more of your PC RPLND stories in this thread and see if you have any recommendations. I'm really hoping for a successful outcome and looking forward to saying "Buh-bye!" to the Teratoma.

    Cheers,
    cram
    Last edited by cram; 10-09-20, 07:10 AM.
    5/1 - Minor swelling and pressure

    5/9 - Back pain and swelling

    5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

    5/26 - Right I/O

    6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

    6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

  • #2
    I had my open RPLND back in June, and it wasn't nearly as difficult as I expected. The biggest key is to get moving as quick as you can. It'll hurt, but you just have to suck it up for awhile. I was in the hospital for 3 days and was able to walk through am airport with just mild pain on day 4. After about a week I was able to do all everyday activities. Within a month I was back on the field coaching football. Was still stiff and had some aches and pains for awhile, but nothing too bad. I do still get indigestion easier than I did before, but it's never been bad enough to mention to a doc. Where will you be having surgery?

    Comment


    • #3
      Glad to hear you were able to make a relatively speedy recovery. I've seen so many different experiences it's hard to judge the recovery time and the time back to work. I'm sure everyone's surgery is a little different depending upon where the nodes are and how many are being pulled out.

      I will be having my operation performed at UCSF at the end of the month.
      5/1 - Minor swelling and pressure

      5/9 - Back pain and swelling

      5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

      5/26 - Right I/O

      6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

      6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

      Comment


      • #4
        Just as an update. I'm three days out from my PC- RPLND. It was a complete bilateral template and was performed open. 2 enlarged nodes were noted and removed. The additional lymphatic material suspended within the RP fat was also removed. 50% of my nerves were spared. The nerves on my right hand side had had the tumors grow around them so they weren't able to be spared. Bummer.


        I definitely recommend an Epidural if you can. Unfortunatley they had an issue with placement of my epidural so I went for a day and a half without solid pain relief from the epidural and had to rely on IV narcotics. That was definatley less ideal as I made me super dizzy and nauseous. The second day was definitely the worst because of this. That being said I was up walking around the day after my surgery and less so the second day. I'm hoping today will be different and I will have better news to report.
        Last edited by cram; 11-01-20, 01:05 PM.
        5/1 - Minor swelling and pressure

        5/9 - Back pain and swelling

        5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

        5/26 - Right I/O

        6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

        6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

        Comment


        • #5
          Glad to hear you're doing ok, keep your spirits up, and rest. The more you can let your body recover the faster you will be on your feet.

          Comment


          • #6
            Walking about three times a day now. Just some small laps. Thr walking helps the intestines reorganize themselves in the belly and helps with nausea caused by lack of motive digestion. I definitely recommend doing what you can to walk as soon as you've got your basic pain under control.

            I have to say I'm personally not a huge fan of IV narcotics after this experience -- really has slowed down recovery.
            5/1 - Minor swelling and pressure

            5/9 - Back pain and swelling

            5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

            5/26 - Right I/O

            6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

            6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

            Comment


            • #7
              Thanks for the update, glad to hear you are on your feet.

              Comment


              • #8
                Update:

                Made it through the PC-RPLND alright. Pain management was a little rough while in the hospital. I wound up staying for 9 days. Recovery at home is going well. Walking helps! Just don't over do it. I'm noticing I'm getting tons of lower back pain when I over do it on the activity. Little by little, I'll get there. Ciao for now.
                5/1 - Minor swelling and pressure

                5/9 - Back pain and swelling

                5/18 -R. TC Diagnosis, No noted enlarged Lymph Nodes on CT report. Report notes (3) enlarged, retroperitoneal, periaortic masses of a fluid density. AFP: ~190, bHG: ~210

                5/26 - Right I/O

                6/10 - Path: 4cm, Mixed GCT with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma <40%; seminoma <1%). LVI present.

                6/17 - AFP: 205, bHCG: 9. More scans on 6/24. Looks like BEPx3.

                Comment


                • #9
                  Welcome home and hope you are on the mend quickly.

                  Mike
                  Oct. 2005 felt lump but waited over 7 months.
                  06.15.06 "You have Cancer"
                  06.26.06 Left I/O
                  06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                  06.30.06 It's Official - Stage I Seminoma
                  Surveillance...
                  Founded the Testicular Cancer Society
                  6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                  For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

                  Comment

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