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Active surveillance and relapse

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  • Active surveillance and relapse

    Hi all!

    First wanted to say thank you to all of you who take the time on this forum. I was diagnosed late June and this was an important resource for me in discovering, understanding and coping with the diagnostic. I look forward to participating back .

    I wanted to understand the literature out there. My tumor size was 6 cm but no rt. My oncologist don’t me to be high risk you need both, otherwise it’s not high nor low. That being said he gave me a 16% relapse and recommended surveillance , along with einhorn, gilligan and pretty much every other doctor I spoke with.

    I wanted to hear thoughts on this and opinions. I went with surveillance but get worried here and there- hopefully that’ll go with time.

    Interestingly my doc also says he thinks the one carbo rec will disappear for the two rounds. Was curious if anyone had seen anything about this.

    Thanks !

  • #2
    We all do get worried with relapses. Without knowing tumor type or previous treatments it’s hard to say, but think of it like this, you have an 84% chance you are cancer free. Those are great odds.
    3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 9/20/19 All clears up to here!

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    • #3
      thanks dccalandrelli! I agree great odds and i'm fortunate that this is the situation i've been given.

      I'm just curious to hear from others if these numbers make sense and if the High vs. Low risk had been explained this way to anyone else. So essentially to be high risk you need both factors, not just one of the two..

      thanks!

      Comment


      • #4
        Ultimately, it may not be the level of risk that plays the biggest role, but your risk tolerance. What will give you a better peace of mind?
        July 2016 - Left I/O
        December 2016 - BEPx3
        All clear for 2.5 years now + new baby!

        Simplify Cancer: Man's Guide to Navigating the Everyday Reality of Cancer
        My Testicular Cancer Support Kit
        First Oncologist Visit Checklist
        Simplify Cancer Podcast

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        • #5
          I could be wrong, but I don,t think tumor size is a risk factor at all. LVI is a much bigger risk factor, especially with Embyonal TC. You didn't mention your tumor type, but that is a very important factor to know when making these decisions.

          Dave
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            Hi All! Sorry for not following up. I had pure seminoma 100%

            I opted for surveillance after the recommendations and my desire to move on - will keep fighting this regardless !

            Thanks all!

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            • #7
              I think it is a good choice. You are closely followed by the tjeck-up protocol and if anything should happen, they have the treatment ready that can cure you :-)

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              • #8
                Hi All,

                So i now have a node near para aortic that is 3.2 cm and was 1.1 a few months ago.

                So clearly stage 2 but doctor wants to check it ins't another type of cancer as this lymph was in my body (at 1.1 cm) 10+ years ago. Because it was in me years ago they downgraded my Cancer to a stage1 seminoma.

                In october was first surveillance, all good. Today that node is 2x + and the doctor is saying either i was misdiagnosed at stage 1 or this could be another cancer (lymphoma).

                Has this happened to anyone? is this kind of increase not normal in that small of a time?

                I'm concerned about the chance of it being lymphoma- and now having to re-go through the wait and what it is...

                Thanks for any replies..

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                • #9
                  I don't know much about lymphoma, but it seems given the timing and your TC diagnosis chances are much higher that it is TC IMHO.

                  If you have normal markers, and a single 3.2CM node and pure seminoma, you could potentially avoid chemo and have an RPLND. I believe this is not standard of care but is currently being trialed at some centers right now because it has shown to be effective after some recent testing. This would have two benefits - 1) being able to confirm exact pathology from a biopsy, and 2) likely avoiding chemo if it is found to be TC. If it is found to be lymphoma, then I'm not sure what the chances you would need further chemo.
                  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!
                  4/15/19: all clears up to this date!

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                  • #10
                    Thanks Biwi!

                    I'm set for a biopsy next week, will be CT guided biposy so they are just taking out a piece to analyse.

                    What you are saying makes sense and i'll make sure to bring it up when i see my oncologist. I'm just amazed that this lymph went from 1.1 to over 3 in 3 months when it was small since 2014,
                    I guess that is my other question- does that growth rate feel plausible;e?

                    Comment


                    • #11
                      It is for non-seminoma. But I don't know enough about seminoma to know if it can grow that fast.
                      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!
                      4/15/19: all clears up to this date!

                      Comment


                      • #12
                        I think seminoma grows much slower than non-seminoma. I had one lymph node > 2cm stay same size from August till my RPLND surgery in December. My urologist and surgeon believed they would find teratoma post RPLND, instead they found seminoma.
                        1/13/17 Diagnosed
                        1/16/17 Right I/O // MGCT non-seminoma
                        70% teratoma (mature & IM), EC 10%, yolk sac 10%, seminoma 10%
                        Pre-op AFP 231/HCG 34. (After surgery all markers normal range)
                        No spread - put on active surveillance

                        3/28/17 Clear CT scans + all markers normal

                        8/13/18 Urologist concerned w/ slow growing lymph node <2cm
                        12/6/18 RPLND (70 nodes removed 3 show seminoma)
                        1/14/19 Oncologist appointment pending further treatment

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                        • #13
                          Ya that’s my understanding also. So is the thought that this would not be related to my testicular cancer but something else?
                          Especially since my left testicular was pure seminoma

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                          • #14
                            My friend had lymphoma 20 years ago, I remember that he had various symptoms like high fever, weight loss, tiredness, blackouts when exercising, even some psychiatric issues like sudden paranoia attacks, even before any lymph node serious enlargement. Doctors suspected he had lymphoma but couldn't find good node for biopsy for verification for fays, they performed biopsies for several nodes and they were able to find just a single cancerous cell for verification. Its a tough desease, he got six or seven chemo cycles and also bone marrow transplant. Of course, there are many types/subtypes/grades/stages of lymphoma. So I think that chances for lymphoma only on base of single enlarged node are just around 0,00001 percent, but they must be 100% sure because if you start with chemo for TC, and it turns out to be lymphoma somehow, then there will be mayor problem with changing the treatment. So, if node is large enough and well shaped for performing biopsy without surgery, it is a good idea. I'm no expert, off course.
                            45yo, left I/O 07/30/2018, T1 pure seminoma, surveillance...
                            Waiting...

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                            • #15
                              Just to update. Turns out I was never stage 1 so starting 3x bep in the upcoming week. First port and pulmonary tests. A bit In shock but I guess this is better than the not knowing .

                              Will be looking throughout the forum but any tips to prepare?

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