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RPLND after 2 years? Help please

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  • RPLND after 2 years? Help please

    Hi all,

    I am Anil. I was diagnosed with TC two years ago in May 2018 –with 60% teratoma, 25% EC, 10% Seminoma, and 5% Yolk sac / 10x7x5 size (I had hydrocele too). My pathology in Turkey did not state any lympho-vascular invasion. After Right OI, my tumor markers almost decreased to the normal limits expect for AFP, which was 1 or 2 units high than the maximum. Doctors did not see anything on scans but got suspicious about possible micro-metastases and I had 3xBEP after which my scans were clean and tumor markers normal. I then moved to the US (New England area) and exported my medical history and images. My tumor has been reexamined in the US and they noted that there was a lympho-vascular invasion. My tumor markers have been always negative since my chemo ended. But earlier this month I had a CT scan and they saw an approximately 1.2x1.1 cm lymph node along the course of the right gonadal vein. Even this is my 3 CT scan after chemo (1 in Turkey right after the chemo, and 2 in the US as part of follow-up) the report stated that this lymph node was not present in my first post-chemo scan in Turkey but visible in first follow-up Ct scan in the U.S. in 2019. More interestingly, this suspicious lymph node did not shrink or get bigger since last year.

    I am really exhausted to navigate this situation. I cannot get convincing answers from the hospital about why they didn't notify about something like this last year and why the node in question did not change size in one year or why my tumor markers have been going stable for some time. They now requested a chest CT that I will have next week to run further tests. They even started to talk about possible RPLND.

    Can someone recommend me an expert in Boston area? I want to have an expert opinion before I decide how to proceed!

    ​Thanks!
    March-April 2018: Lump and discomfort.
    May 2018: Right I/O
    Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
    Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
    Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
    Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
    June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
    Post-chemo: Markers normal, scans clean. Moving to US.
    September 2018-May 2020: Markers and scans clean
    May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
    June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

  • #2
    At his point I think the lymphovascular presence is not a factor. One would use it to try to determine risk of relapse for stage I disease (which I am assuming you had vs. a questionable stage IS disease, I am not sure what the actual readings of your AFP were). In stage I disease BEPx1 would be most likely sufficient so you have passed that point. For stage IS the BEPx3 is more used.

    A solitary metastasis along the gonadal vein would be a bit more of a rarer presentation and the fact that it has not changed, would to me, mean good news.

    However, if I were in Boston, I would go see Dr. Chris Sweeney at Dana-Farber as he is a top guy and a top expert.

    By the way, I just spent some time with Dr. Tinay Ilker from Instanbul in February. A lovely guy as well. Not sure where you were treated.

    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


    • #3
      Thanks Mike. I was not in Istanbul for my treatment unfortunately. I heard before that there are great doctors though. I will definitely try to get in touch with Dr. Sweeney. Thanks for the suggestion!

      My pre-surgery AFP was 560, and post-surgery were 164 and then 17.29. (0-13.4 ng/mL)
      Pre-surgery beta HCH was 109,69, and post-surgery 10,13 –and then less than 1.20
      Pre-surgery LDH was 317 - post surgery 220 and then 173.

      Although my CT looked clean around abdomen, because of AFP being above the limit, I was given BEPx3 for suspecting micro metastasis.
      March-April 2018: Lump and discomfort.
      May 2018: Right I/O
      Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
      Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
      Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
      Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
      June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
      Post-chemo: Markers normal, scans clean. Moving to US.
      September 2018-May 2020: Markers and scans clean
      May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
      June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

      Comment


      • #4
        Geçmiş olsun Ümit..

        Comment


        • #5
          My chest CT scan came all clear –no suspicious growth or anything (good news!). I will talk with Dr. Sweeney later today and perhaps depending on his answer I will figure out what to do!
          March-April 2018: Lump and discomfort.
          May 2018: Right I/O
          Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
          Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
          Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
          Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
          June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
          Post-chemo: Markers normal, scans clean. Moving to US.
          September 2018-May 2020: Markers and scans clean
          May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
          June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

          Comment


          • #6
            Road to RPLND later in June. I had a great experience talking with Dr. Sweeney and he explained everything clearly. He answered all of my questions before I had a chance to ask. I will have further consultations later this week with surgeons and possibly get ready for the surgery. I understood, once more, how important it is to trust your doctors. Be well everyone!
            March-April 2018: Lump and discomfort.
            May 2018: Right I/O
            Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
            Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
            Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
            Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
            June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
            Post-chemo: Markers normal, scans clean. Moving to US.
            September 2018-May 2020: Markers and scans clean
            May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
            June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

            Comment


            • #7
              Hi again. I was wondering if any of you had to be alone in post-RPLND recovery process.It is highly likely that my loved ones won't be able to come to help me because of the pandemic. I have friends who can give me a ride to hospital and back to my apartment, also helping with groceries etc., but I was wondering how safe it is to spend post-surgery recovery on your own. Did anyone experience anything similar or any suggestions? I know it is different for everyone but I read some entries on the forums that people who compared BEPx3 and RPLND said BEPx3 was more difficult. I am thinking of cooking and freezing some stuff according to post-RPLND dietary restrictions but I am more worried about things I cannot think of. Any comment would be appreciated!
              Thanks!
              March-April 2018: Lump and discomfort.
              May 2018: Right I/O
              Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
              Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
              Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
              Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
              June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
              Post-chemo: Markers normal, scans clean. Moving to US.
              September 2018-May 2020: Markers and scans clean
              May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
              June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

              Comment


              • #8
                Following this, because I'm in the same boat. I live in Northern VA and am having mine June 10th at John's Hopkins. Parents are going to come down from Ohio and take me to the hospital, but they're not allowed in.

                Comment


                • #9
                  Originally posted by FBCoachC View Post
                  Following this, because I'm in the same boat. I live in Northern VA and am having mine June 10th at John's Hopkins. Parents are going to come down from Ohio and take me to the hospital, but they're not allowed in.
                  Good luck with yours! I will get a date for mine tomorrow. I live in Providence, RI and will go to Boston for RPLND. I hope more people will post and we'll both get some tips and comments.
                  March-April 2018: Lump and discomfort.
                  May 2018: Right I/O
                  Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
                  Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
                  Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
                  Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
                  June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
                  Post-chemo: Markers normal, scans clean. Moving to US.
                  September 2018-May 2020: Markers and scans clean
                  May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
                  June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

                  Comment


                  • #10
                    praxis34, if you are going to be alone I would stock up on easy to prepare items ( IE toss in the microwave for a few minutes & eat) You will not feel like standing in the kitchen for an hour or more cooking.I felt lucky 45 years ago to be able to go stay with my folks & have someone to take care of me. I understand the surgery is a bit easier these days, but if there is anyone in your life that might provide any help, it will make it easier.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      Thanks for your reply Davepet! I've been thinking about stocking up too –perhaps some meals sensitive to any possible post-op dietary restrictions. I will ask my surgeon today and if he has any tips or warnings I may post them to give people some idea.
                      March-April 2018: Lump and discomfort.
                      May 2018: Right I/O
                      Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
                      Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
                      Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
                      Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
                      June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
                      Post-chemo: Markers normal, scans clean. Moving to US.
                      September 2018-May 2020: Markers and scans clean
                      May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
                      June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

                      Comment


                      • #12
                        It looks like my surgery will be scheduled for the last or third week of June. My doctor anticipates 3-4 days stay in hospital and also that I would be able to do small walks inside my apartment even I have to be alone. I will post more once I get more information not to guide anyone but perhaps give an idea to people in similar conditions.
                        March-April 2018: Lump and discomfort.
                        May 2018: Right I/O
                        Pre-surgery \: AFP: 560, b-HCG: 109.69, and LDH 317
                        Post-surgery: AFP: 164 then 17.29 / b-HCG- 10.13 then <1.2/ LDH: 220 to 173.
                        Pre-chemo: No retroperitoneum lymph node, small pulmonary lesion of 3mm in question.
                        Pathology: 60% teratoma, 25%EC, 10% seminoma, 5% yolk sac No LVI / Pathology revised in the US in 2019 LVI +
                        June-August 2018: BEPx3 micro metastasis? good risk low volume metastatic NSGCT.
                        Post-chemo: Markers normal, scans clean. Moving to US.
                        September 2018-May 2020: Markers and scans clean
                        May 2020: Markers negative, AFP 3.9 to 5. CT: one gonadal lymph node measure 1.2x1.1cm. No significant change compared to 2019 but increase compared to post-chemo scans. Teratoma?
                        June 2020: RPLND - 2 teratomas - 2.2cm and 1.0cm

                        Comment


                        • #13
                          I too have an RPLND on June 10th. I went through 4xEP and have two nodes that are still around 1.5 cm. They started at 4 cm. My original pathology from the orchiectomy included 30% Teratoma so they want to surgically remove them. One of the nodes is in my chest so I'll have two separate surgeries.

                          I hope your procedures go well! Have either of you talked with your surgeon about a minimally invasive approach with robotic assist for the RPLND?

                          Comment


                          • #14
                            We discussed it briefly, but he was steadfast that open is the best option post-chemo. He put the odds of saving the nerves at 75%.

                            Comment


                            • #15
                              The vast majority of docs are not in favor of robotic RPLND. While it is possible that might change at some point, currantly most think open is best.
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment

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