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New to this community - after orchiectomy and awaiting next steps

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  • New to this community - after orchiectomy and awaiting next steps

    Hi. I am new to this community. I appreciate the possibility of sharing this experience and giving/receiving support.

    In January of 2020, I was diagnosed with testicular cancer. I had noticed discomfort since the prior Thanksgiving (~1month) and went in to the hospital for what I thought was a groin injury. After tests and meeting with my urologist, he diagnosed me with cancer in my right testicle. Two days later, I had orchidectomy surgery to remove the right testicle. After surgery, it was officially diagnosed as nonseminoa testicular cancer (pT2 3.2 cm pure embryonal carcinoma T2Nx).

    Then, I had a CT scan done, which noticed a dilated lymph node and liver lesion. An MRI scan showed the liver lesion was benign. Since then, I have been referred to Indiana University-Indianapolis by my oncologist to investigate a dilated lymph node in my abdomen.
    11/28/2019 - Notice swelling in right testicle
    01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
    01/08/2020 - Right Radical Orchiectomy
    02/11/2020 - RPLND surgery at IU; begin surveillance
    03/01/2020 - Notice slight soreness/discomfort coming from left testicle
    03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
    05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
    06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
    Currently: Surveillance scans on 08/05/2020

  • #2
    I am assuming that by "dilated lymph node" you are saying it is "enlarged" ?

    If I am correct in that than you likely will need chemotherapy, as that is the preferred treatment in cases like this. Where are you located? A trip to Indiana seems unneeded at this point, unless it is very convenient to do.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #3
      So, I did mean "expanded" when I used the term "dilated." I actually just got back home from my appointment at IU-Indianapolis. My plan is to follow doctor's recommendation of RPLND surgery at IU-Indianapolis to remove the dilated lymph node and any others nearby next Tuesday. I am happy that they were able to get me in so quickly and am hopeful for the prospects.
      11/28/2019 - Notice swelling in right testicle
      01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
      01/08/2020 - Right Radical Orchiectomy
      02/11/2020 - RPLND surgery at IU; begin surveillance
      03/01/2020 - Notice slight soreness/discomfort coming from left testicle
      03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
      05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
      06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
      Currently: Surveillance scans on 08/05/2020

      Comment


      • #4
        If IU is local for you that is great. They are top notch. I had my RPLND there after a recurrence. We broke the 10 hour drive home up by staying a night at the wisconsin dells. That's roughly halfway back to minneapolis. Needless to say I didn't do any swimming. But my wife was able to relax there a bit!
        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


        • #5
          That is great that you were able to make it to IU. I feel fortunate that I have been to get into the right doctors in what so far seems like a quick amount of time.
          11/28/2019 - Notice swelling in right testicle
          01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
          01/08/2020 - Right Radical Orchiectomy
          02/11/2020 - RPLND surgery at IU; begin surveillance
          03/01/2020 - Notice slight soreness/discomfort coming from left testicle
          03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
          05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
          06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
          Currently: Surveillance scans on 08/05/2020

          Comment


          • #6
            Has anyone felt soreness in lower back or stomach from a dilated lymph node? I am awaiting RPLND surgery for a lymph node. I keep worrying that soreness I am feeling is due to the cancer. IU doctors say I should not be able to feel it, but I am not sure what else it would be.
            11/28/2019 - Notice swelling in right testicle
            01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
            01/08/2020 - Right Radical Orchiectomy
            02/11/2020 - RPLND surgery at IU; begin surveillance
            03/01/2020 - Notice slight soreness/discomfort coming from left testicle
            03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
            05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
            06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
            Currently: Surveillance scans on 08/05/2020

            Comment


            • #7
              Originally posted by GD1345 View Post
              Has anyone felt soreness in lower back or stomach from a dilated lymph node? I am awaiting RPLND surgery for a lymph node. I keep worrying that soreness I am feeling is due to the cancer. IU doctors say I should not be able to feel it, but I am not sure what else it would be.

              The physicians at IU see 100s of patients a year, know where the lymph nodes are located, their size, etc. so I would defer to them really if they think it could cause pain. With that said, it isn't impossible that the node could cause some pain but it may also just being the mind playing tricks on you as well as the mind is a pretty powerful thing.

              With surgery coming up, I wouldn't be that overly concerned with it since it will be quickly removed anyhow.

              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


              • #8
                Thanks. That makes sense. I am looking forward to the recovery phase. (fingers crossed and prayers)
                11/28/2019 - Notice swelling in right testicle
                01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
                01/08/2020 - Right Radical Orchiectomy
                02/11/2020 - RPLND surgery at IU; begin surveillance
                03/01/2020 - Notice slight soreness/discomfort coming from left testicle
                03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
                05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
                06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
                Currently: Surveillance scans on 08/05/2020

                Comment


                • #9
                  As of tonight, I am one week post-RPLND surgery. I had the surgery done at IUPU-Indianapolis. My surgery was last Tuesday and then. I stayed in hospital for three days before returning home on Friday. At this point, pain is minimal at a 2-3 out of 10. It really only gets difficult when transitioning from sitting to standing position.

                  I am currently awaiting a call from the doctor with pathology test results on the lymph nodes that were removed. I feel a bit in limbo here: Do I feel excited that the possible cancerous lymph nodes are out of me OR do I still wonder/worry about what could be left? IU did not have me do a follow-up CT scan after the surgery to see if there is any cancer cells left. Should this have been done or is there anything to be done at this point?
                  11/28/2019 - Notice swelling in right testicle
                  01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
                  01/08/2020 - Right Radical Orchiectomy
                  02/11/2020 - RPLND surgery at IU; begin surveillance
                  03/01/2020 - Notice slight soreness/discomfort coming from left testicle
                  03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
                  05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
                  06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
                  Currently: Surveillance scans on 08/05/2020

                  Comment


                  • #10
                    Originally posted by GD1345 View Post
                    As of tonight, I am one week post-RPLND surgery. I had the surgery done at IUPU-Indianapolis. My surgery was last Tuesday and then. I stayed in hospital for three days before returning home on Friday. At this point, pain is minimal at a 2-3 out of 10. It really only gets difficult when transitioning from sitting to standing position.

                    I am currently awaiting a call from the doctor with pathology test results on the lymph nodes that were removed. I feel a bit in limbo here: Do I feel excited that the possible cancerous lymph nodes are out of me OR do I still wonder/worry about what could be left? IU did not have me do a follow-up CT scan after the surgery to see if there is any cancer cells left. Should this have been done or is there anything to be done at this point?

                    I would assume if they thought you needed a post-op CT that they would have ordered one. I would try to sit tight and see what the pathology has to say. They were in there feeling and looking around and remove nodes according to templates too so it all should have been cleared out.

                    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


                    • #11
                      Thanks for the feedback. I talked to IU yesterday and also am still scheduled for my follow-up on Mar 11. They think, at that point, that I will be on surveillance.

                      I just worry because it seems like in other people's experiences that chemo happened first and then RPLND surgery. I just worry that I skipped a step by just doing RPLND.
                      11/28/2019 - Notice swelling in right testicle
                      01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
                      01/08/2020 - Right Radical Orchiectomy
                      02/11/2020 - RPLND surgery at IU; begin surveillance
                      03/01/2020 - Notice slight soreness/discomfort coming from left testicle
                      03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
                      05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
                      06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
                      Currently: Surveillance scans on 08/05/2020

                      Comment


                      • #12
                        Well, back when I had my first TC, there was no chemo & virtually every case got an RPLD shortly after the I/O. These days an RPLND is sometimes used first for nonseminoma types of TC, but recently they are testing it on seminomas as well. ( seems odd to me they need to do trials on this instead of mining 40-50 year old data). In any event, the path report will shed some clarity on the path forward. It is, by the way easier to perform an RPLND prior to chemo, it is considerably more difficult after chemo.
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          Interesting. Thanks for the insight. The final pathology report was done on 33 removed lymph nodes. Two of them had the same embryonal carcinoma on them as the right removed testicle. Is it okay to think that those two nodes were what was remaining of the cancer and it was all gotten? I feel in a sense of limbo right now and wish I was having a more immediate CT scan.
                          11/28/2019 - Notice swelling in right testicle
                          01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
                          01/08/2020 - Right Radical Orchiectomy
                          02/11/2020 - RPLND surgery at IU; begin surveillance
                          03/01/2020 - Notice slight soreness/discomfort coming from left testicle
                          03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
                          05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
                          06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
                          Currently: Surveillance scans on 08/05/2020

                          Comment


                          • #14
                            I'm not 100%sure on this, but I seem to recall that there is some sort of threshold on RPLND pathology that triggers the need for chemo post surgery. but I can't recall what it is. Keep us posted as you learn more.
                            Jan, 1975: Right I/O, followed by RPLND
                            Dec, 2009: Left I/O, followed by 3xBEP

                            Comment


                            • #15
                              Interesting. Thanks. I actually emailed Dr. Einhorn directly about whether I should have a CT scan sooner rather later. He said there is no need (and it's too early) for a CT scan at this point. I should wait to do the next one in June.
                              11/28/2019 - Notice swelling in right testicle
                              01/06/2020 - Diagnosed with cancer; Stage 2 nonseminoa 100% embryonal carcinoma
                              01/08/2020 - Right Radical Orchiectomy
                              02/11/2020 - RPLND surgery at IU; begin surveillance
                              03/01/2020 - Notice slight soreness/discomfort coming from left testicle
                              03/05/2020 - Ultrasound show subtle lesion; surveillance bloodwork/scans clear
                              05/12/2020 - surveillance bloodwork/scans - all clear; ultrasound shows slight growth in lesion on left testicle
                              06/09/2020 - Left Radical Orchiectomy; Stage 1 nonseminoa 100% embryonal carcinoma
                              Currently: Surveillance scans on 08/05/2020

                              Comment

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