Announcement

Announcement Module
Collapse
No announcement yet.

Pre orchiectomy

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Pre orchiectomy

    Just diagnosed with testicular cancer. 2.6CM mass in right testicle (feels like it is growing incredibly quick from self exams). CT scan came back completely clean and one marker was slightly elevated (I believe hcg?)

    Family wants me to go to chief of urology Mark Litwin at UCLA for surgery (which earliest would be
    Thursday) however I already had an appointment (which I can change) for orchiectomy tomorrow (Wednesday) with a very highly regarded TC surgeon. I just want it out of my body and can always switch after surgery to UCLA however family feels it's better to have the same doctor doing the surgery as the post care doctor. Any advice?





    Last edited by uclabruin; 12-14-19, 12:33 AM.

  • #2
    The surgery is straight forward and recovery doesn't take very long, I'd imagine you'll be fine with your appointment tomorrow. As far ad risk of spread from waiting for the other surgeon, I'm not sure on that.

    Comment


    • #3
      Agree with FBCoachC. Also, waiting one day is unlikely to make any clinical difference in your outcome.
      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: begin 4xEP, end 9/18/15
      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!
      10/22/19: all clears up to this date!

      Comment


      • #4
        Personally I would like to operate as soon as possible. Later treatment I will follow the TC expert.

        Non seminoma TC grow very fast. But people don’t know which histology it will be without orcheictomy.

        Ran’s mom
        Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

        08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

        Comment


        • #5
          Yeah, the surgery is simple, it won't make any difference who does it in terms of your subsequent follow-up care.

          Good luck & let us know how it goes!
          Painless lump 5/18/2017
          Orchidectomy June 2017 (4.5cm, rete testis involvement)
          Chemo Summer 2017 (2x7AUC carboplatin)
          No evidence of relapse since, but plenty of anxiety about it.

          I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

          Comment


          • #6
            Ended up doing Orchidectomy today December 13th based on recommendation of Litwin. First time being put under which was definitely interesting. No real pain but worried when pain meds completely wear off. Was only in the hospital for a few hours total. Any recommendations on how much to ice? Did you ice directly on the wound or above the boxers. Went to the restroom without pain but did notice a small amount of bruising on my penis. No pain in my scrotum. Ended up getting prosthetic which is quite interesting but I can't tell its even there.

            Now the waiting game on the results.

            Comment


            • #7
              Congrats on getting through the surgery (and anesthesia)!
              I think I iced directly on the wound, but I'm very cold-tolerant, so it takes a lot of ice to make me uncomfortable. I imagine you've settled into a routine by now (sorry I didn't see your query earlier!)

              How's the tapering down off the pain meds going? It was pretty straightforward & easy for me, after a few days I just didn't want to be loopy anymore, so I got off the opioids reasonably quickly. One thing that surprised me was that, as I came off the opioids, my nerves in the area started giving me wierd sensations, but those went away after another few days (still, I called the doc because it worried me, and she explained why it was happening).

              And good luck with the results, I'm curious to hear how it's all going for you.
              Painless lump 5/18/2017
              Orchidectomy June 2017 (4.5cm, rete testis involvement)
              Chemo Summer 2017 (2x7AUC carboplatin)
              No evidence of relapse since, but plenty of anxiety about it.

              I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

              Comment


              • #8
                Thanks!

                Still waiting on Pathology report. Going to get blood markers this Friday (7 days after surgery)
                My blood report prior to the surgery had HCG 68 with other markers normal and ultrasound had mass at 2.7CM
                CT scan was all clean
                Should I be worried about the HCG level?

                Comment


                • #9
                  Your HCG may still be a bit elevated 7 days after surgery, it takes some time for it to come down below detectable levels. I had a bump in my HCG a few months later, which didn't bother my oncologist, but made me much more worried than I should have been.

                  IIRC, the HCG is the most sensitive of the tests, so if your LDH and AFP are low, then that's a very good sign.

                  I assume you'll get the pathology results as well on Friday? You'll know a lot more at that point.

                  Rooting for you, good luck tomorrow!
                  Painless lump 5/18/2017
                  Orchidectomy June 2017 (4.5cm, rete testis involvement)
                  Chemo Summer 2017 (2x7AUC carboplatin)
                  No evidence of relapse since, but plenty of anxiety about it.

                  I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

                  Comment


                  • #10
                    The half life of hcg is 24-36 hours so if the marker test was done very close to the surgery, your hcg should be down to single digits. If there was a significant time between the first test and surgery, your markers could have been higher at the time of surgery, so it might take more time to get there. In any event your pre surgery markers are not all that high, so I wouldn't be concerned unless they haven't dropped.
                    Last edited by Davepet; 12-22-19, 07:56 PM.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Any news on your beta-hCG?

                      By the way, you are in great hands with Dr. Litwin, not only is he a well recognized TC doctor but he is a survivor himself, no sure if he has shared that with you or not.

                      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


                      • #12
                        Finally got all of my results. Have not had a chance to talk to Litwin yet but the results got uploaded today.
                        CT-Scan All Clear
                        Blood makers completely back to normal after surgery
                        Pathology was not what I was hoping for:
                        Mass: 3.6 x 2.2 x 2.0 cm
                        Seminoma (percentage): 60 %
                        Embryonal carcinoma (percentage): 40 %
                        Yolk sac tumor, postpubertal type (percentage): <1 %
                        Tumor invades rete testis
                        Tumor invades hilar soft tissue
                        Lymphovascular Invasion: Present
                        Spermatic cord margin is negative
                        Primary Tumor (pT) pT2

                        ​Not the news I was hoping for but it seems that this would be classified as Non-Seminoma Stage 1b. From what I have read on the forum most EC stage 1b have similar findings to my pathology. I'm assuming I'll have to choose between 1 x BEP or RPLND which both sounds extremely scary. I don't think maintenance is an option with EC having a higher chance of relapse over pure Seminoma.


                        Comment


                        • #13
                          I'm currently in Day 2 of Cycle 3 of BEPx3, actually sitting in the chair as a type this. From my experience, BEP×1 will leave you feeling crappy for about a week, Sat of the long week was the worst, and with low blood count for a week about 3 weeks later. It really wasn't all that bad.

                          Comment


                          • #14
                            Thanks! I haven't been told what the recommended dose is yet just assuming 1xBEP since its currently undetectable but the pathology shows EC with LVI. From everything I've read this is considered stage 1B and the typical recommendation is is 1xBEP. Do you think it could be more extreme based on the above info?

                            Also it's weird that Seminoma and EC are 100% but they show Yolk sac as under 1%

                            Comment


                            • #15
                              Not sure on the percentages not adding up, my assumption is that it's just due to rounding. One of the others is probably actually 39.9% or something.

                              As far as evaluating your staginging, I'm not sure. I was a little further along, had multiple enlarged lymph nodes. I do have a heavy EC component, more than you do, and know they like the attack that with chemo. It spreads quickly, which is what makes it uniquely susceptible to chemo. Thay may lead them to reccomend 1x BEP instead of RPLND.

                              Comment

                              Working...
                              X