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  • Post Orchiectomy, waiting on Pathology...

    Hi All,

    I'm completely new to this forumn. I had a R/O two weeks ago after being diagnosed three weeks ago. My blood work showed elevated AFP and HCG before surgery along with a CT scan that showed a few abnormally sized, retroperitoneal soft tissue masses that don't appear to be enlarged lymph nodes. They opted to do a CT before surgery because I've been having lower back pain which keeps persisting.

    I'm still waiting on the pathogy two weeks on and am spinning a little bit on what all of this means for next steps. The doctor mentioned that metastatic Teratoma can present as soft tissue masses in the RP instead of classic lymph node invasion but that we would ultimately have to wait on the pathology. I find myself trying to strike a balance between being patient but being as informed as possible.

    I have a few questions that I would appreciate some support with:

    Has anyone had a similar diagnosis?

    Is two weeks waiting for pathology normal?

    If they opted for surveillance is it unreasonable to seek a second opinion?

    I would really appreciate your perspectives and experiences.

    Thanks.
    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
    Hi cram. Sorry to welcome you here! I am not a medical expert but after reading many posts on these forums, I expect that others might ask how elevated your AFP and HCG were before the R/O and right after that. You might want to share them. Also, I guess they have done the CT both for chest and abdomen, right? I am not familiar with the "soft tissue masses" vocabulary but I am sure there are others who can drop a few words.

    - I don't remember exactly how long I waited for my pathology but it must be around 2-3 weeks but I wasn't in the US. I was more focused on the tumor markers right after my R/O. If you are based in the US, perhaps you can check out a list of experts: https://www.testicularcancerawarenes...cancer-experts

    - If you search for the forums, you might some discussions/evaluations of surveillance versus chemo and/or RPLND or different orderings of them.

    - I think it makes a perfect sense to seek a second opinion. Perhaps you can keep us posted so you can double check or hear from people in similar situations.
    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


    • #3
      Hi praxis34,

      Thanks for reaching out and sharing your perspective and the reccommended resources.

      Pre-surgery my AFP was ~200 and my HCG was ~270. No post surgery blood work. The oncology nurse wants to wait until after we get the pathology back to do follow up blood work and imaging.

      I'll have to check out the surveillance forums to better understand others experiences and see what led them to their decisions. All the best with your RPLND!
      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
        Hi Cram,
        I seem to recall getting my path report a week afer my I/O, but others report 2 weeks or even longer, depends somewhat on where you are located.Also, there is little point in a second opinion if they recommend surveillance. Reason is the surveillance protocol will catch anything that flares up in pleanty lf time to treat it & the treatment will be the same ether way.

        At this point the waiting is the hardest part, you simply need more info to figure out the way forward. Please keep us posted as you learn more.
        Jan, 1975: Right I/O, followed by RPLND
        Dec, 2009: Left I/O, followed by 3xBEP

        Comment


        • #5
          Hi davepet,

          Thank you for your reply. I think you're right but given that I'm being treated at a Comprehensive Cancer Center in the US I thought it was a little strange that it's taking a while. I think COVID may unfortunately have something to do with it.

          The hardest part is waiting for sure. I'm wondering whether I should continue to be patient or be more persistent and reach out to the attending physician to see if they can obtain an update on the pathology.

          Anyways, I think I would probably be alot more nonchillant if it wasn't for the RP soft tissue masses that presented on my original CT. I'll update once I learn more. Thanks.
          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


          • #6
            Just an Update:

            Thankfully pathology report came in today. Pathology staged at pT2 with LVI. Determined to be a mixed germ cell tumor with syncytiotrophoblastic giant cells (embryonal carcinoma, 30%; yolk sac tumor 30%; teratoma).

            Given the >20% EC + LVI, the team is thinking that some early treatment, over surveillance, is probably warranted along with additional follow up on the unknown soft tissue masses. My NP mentioned adjuvant chemo would likely be offered by medical oncologist with possibility of 3xBEP depending on what the blood work shows.

            It looks like Praxis went through a similar staging, has anyone else experienced a similar tumor staging? What was your treatment plan?
            Last edited by cram; 06-11-20, 08:41 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


            • #7
              I think among other things I had two things that the doctors wanted to be more cautious about it. One was my AFP stayed above the lab limits which indicated it did not decrease enough according to its 5-7 day pattern. Second, there was this pulmonary lesion raised some concerns and it disappeared after 3xBEP. I received some second opinions favored surveillance, chemo right away, and doing some extra blood work after 5-6 weeks after my R/O to make the right decision. I went for 3xBEP and RPLND first was not a choice for me because I had to travel a lot to find experienced surgeons etc.
              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
                Before any decisions can be made on surveillance or adjuvant chemotherapy, the assessment of post-op tumors markers should be made as well as the issues from the CT. Your AFP should drop in half-every 7 days and the beta-hCG around every 3 days. Sometimes they drop more slowly so the drop itself is the important part but to be eligible for either surveillance or adjuvant chemo the markers should be negative. Even with negative markers, making sure the CT is not showing any spread is important before getting adjuvant chemotherapy, that would end up being under treatment if they masses are metastasis. Hard to assess without more details as far as location and size. However, in the issue of uncertainty, with negative markers, a follow up CT in 4 to 6 weeks tor reassess the areas of concern is what I would as my doctor about. I would want confirmation of growth, and the need for BEPx3 or the disappearance and use of BEPx1 before I jumped into any decision. If markers are elevated and masses then yes, BEPx3 is what I would expect. With negative markers and growth, then a primary RPLND may even be an option and may avoid the need for chemotherapy if the masses are teratoma or small volume disease. Unfortunately, as mentioned, it may be more waiting, which is the worst.

                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


                • #9
                  Hi Mike and Praxis,

                  Thank you for the thoughtful responses and for being willing to share your perspective and to provide some additional feedback on my specific situation.

                  As of the pre-op CT there were three, liquid density pariaortic soft tissue masses with the largest just over 2cm. The radiologist did not note that these were associated with lympadenopothy. The urologist and NP both shared they are not quite sure what the mass could be and are waiting on results of the next CT to see if there is a change in size one way or the other. The fact that that they are periaortic has me a little more concerned. I'll update once I find out more. Thanks for the support.
                  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


                  • #10
                    Hi All,

                    This is an update. I had some wild chest pains over the weekend and a fever that lasted two days. Got COVID tested and it came out negative. Those symptoms have fortunately gone away.

                    Blood serum tumor markers came back. AFP is elevated above pre I/O values (205). HCG had decayed but still slightly elevated (9). I was able to get my medical oncology visit moved up by a week to tackle the his sooner than later. It appears that primary chemo is now most certainly the best path forward. I consulted Dr. Einhorn, and he graciously and quickly provided the same feedback. (Feedback in less than 12hrs) with the preference to remimage the masses before chemo and pay attention to their size during trestment. If they dont respond then an RPLND will be necessary.

                    I've seen so much mixed feedback about getting RPLNDs done after chemo especially if your interested in a LP-RPLND as an option. Any feedback on this? I'm not sure if I really have a choice.
                    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


                    • #11
                      Sorry to hear the news about the AFP and glad that you reached out to Dr. Einhorn. Not needing the BEP obviously was preferred but with the three potential spots and the rising AFP I am guessing it is pretty unavoidable, and I am guessing Dr. Einhorn agreed as well. Wishing you all the best and hope they can get things started sooner than later so that you can get past this ordeal as quick as possible. Keep us posted.

                      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
                        Hi Mike,

                        Thank you for the words of encouragement. I have my third day of BEP later today. Strangely enough by LDH was elevated for the first time right before Chemo. However, with persistent AFP after surgery I'm not entirely surpised that the LDG began to rise due to some lingering metastatic disease in my lymph nodes. Have you heard of this? Otherwise, it's going pretty well so far. Definitely not a complete cake walk but it's certainly managable. Biggest thing im finding is that sleep and excercise and plenty of hydration is crucial. I've continued to work the past two days and it's not affected my performance too much other than feeling a bit tired after 4 hours of meetings. Then again, who wouldn't?

                        Got through the Bleo injection yesterday without a reaction. Super thankful for that. Looks like it will just another day at a time to beat this thing.

                        Cheers,
                        Cameron
                        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

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