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  • Enlarged Para-aortic lymph node

    Hi,

    As with most people here, sitting and waiting to see your oncologist causes a lot of anxiety! After being diagnosed with 100% EC stage 1, and being on surveillance for 5 months, my latest results came back with the following:

    Blood work: LDH >400 (AFP, HcG normal)

    Scans: abnormality (suspect to be lymph node) in the right para-aortic region measuring 24 mm. This was not present previously.

    My urologist was obviously concerned and sent me to see an oncologist who I see in a couple of days.

    Am I correct in saying the most typical area for relapse is in the para-aortic region?

    Also is it unusual for previous scans to not even mention that area then in the space of less than 3 months be a suspicious 24mm node?

    Also does anyone know if a PET scan is even useful for non-seminomas?

    Sorry for all these questions but it is assuring to here of people's thoughts/personal experiences...

    I am a realist and understand the results don't look great but hey, here's hoping for the best!

    Thanks
    22yr old from Australia

    Jun 13 - right I/O
    - 100% EC with no LVI - Stage 1
    Jul 13 - Surveillance
    Nov 13 - CT scan - 23mm 'abnormality' in para-aortic region (mostly solid)
    - PET scan confirmed recurrence
    Dec 13 - 3 x BEP started
    Jan 14 - Changed treatment to 4 x EP due to lung problems
    Feb 14 - Follow up CT scan showed 20mm 'abnormality' (mostly cystic/fluid - less solid)

    ............Scheduled in for PET scan and most likely RPLND to remove lymph node.

  • #2
    I can only speak for seminoma, but mine showed up there and without prior warning. That said, I found out almost a year later when I was given the wrong report that it was noted as 6mm four month prior to 3cm or so.

    I believe the PET scans are mainly used with the seminoma variety.

    Hope your follow up is soon so you can get some answers. Wishing you the best.
    Greg
    2011: July 7 - Right I/O, Aug 4 - Seminoma - 2.7cm - Surveillance
    2012: July 30 - Relapse, 3cm paraaortic node, blood work normal.
    Nov 6th - Finished BEPx3
    Dec 10th - One year post chemo all clear

    Comment


    • #3
      Thanks Greg.

      I see my ONC tomorrow to go through past films and decide what he wants to do. It seems very unlikely with this suspicion in this area he will simply say continue surveillance and have more tests in 3 months. For that reason I am preparing myself for having to have chemo.

      That being said, (given my job in the army) I was wondering how long 3xBEP will typically take to do and recover? I understand it is approx 9 weeks for the treatment itself?

      How long after they were finished did people find it took before they were fully up and running again?

      Thanks, Hugo.
      22yr old from Australia

      Jun 13 - right I/O
      - 100% EC with no LVI - Stage 1
      Jul 13 - Surveillance
      Nov 13 - CT scan - 23mm 'abnormality' in para-aortic region (mostly solid)
      - PET scan confirmed recurrence
      Dec 13 - 3 x BEP started
      Jan 14 - Changed treatment to 4 x EP due to lung problems
      Feb 14 - Follow up CT scan showed 20mm 'abnormality' (mostly cystic/fluid - less solid)

      ............Scheduled in for PET scan and most likely RPLND to remove lymph node.

      Comment


      • #4
        Originally posted by SimonHT View Post
        Thanks Greg.

        I see my ONC tomorrow to go through past films and decide what he wants to do. It seems very unlikely with this suspicion in this area he will simply say continue surveillance and have more tests in 3 months. For that reason I am preparing myself for having to have chemo.

        That being said, (given my job in the army) I was wondering how long 3xBEP will typically take to do and recover? I understand it is approx 9 weeks for the treatment itself?

        How long after they were finished did people find it took before they were fully up and running again?


        Thanks, Hugo.
        I think this will be different for everyone who goes through it. I finished round 3 in BAD shape! However, I am 1 month out now and I feel pretty close to normal (well pre-chemo). I was back to work about 1 week after my last Bleo. BUT, like I said I finished BAD. If you have few side effects I would think you will be up and running quicker than I was. Being young and in shape, and in the Army I would like to hope you breeze right through the chemo! I think what did me in was my LOW White Blood Cells when I started round 3.
        March 2012 - I/O Right Testicle (pure Seminoma)
        April 2012 - July 2013 surveillance
        July 12, 2013 LDH 365, Node is in abdomen size = 2.7cm. (treatment needed)
        August 5, 2013 beginning 3xBEP

        http://www.caringbridge.org/visit/jimmiller71

        Comment


        • #5
          Finally met with the oncologist!

          Hi all,

          I met with my oncologist today and essentially although he said the 24mm area in para-aortic region is indeed suspicious, but he said by looking at the films that it is not clear cut, and could in fact be something else...

          He then said there is no point jumping straight into Chemo treatment, and that it would be better to wait to have follow up scans in 3 months because from there he could confirm if the suspicious area has DECREASED or INCREASED in size...

          I am not overly confident with this, but I guess it does make sense.

          From this though, I have 2 questions:

          1) Would there be any difference in terms of cure % whether I have Chemo now, or in 3 months? And if not, isn't it therefore logical I wait 3 months in order to 100% confirm it is cancerous?

          2) and is it possible that a virus/infection during the time of the CT scans could have given this abnormal suspicious appearance of 24mm?

          Once again, thank you kindly for helping through these tough times.

          22yr old from Australia

          Jun 13 - right I/O
          - 100% EC with no LVI - Stage 1
          Jul 13 - Surveillance
          Nov 13 - CT scan - 23mm 'abnormality' in para-aortic region (mostly solid)
          - PET scan confirmed recurrence
          Dec 13 - 3 x BEP started
          Jan 14 - Changed treatment to 4 x EP due to lung problems
          Feb 14 - Follow up CT scan showed 20mm 'abnormality' (mostly cystic/fluid - less solid)

          ............Scheduled in for PET scan and most likely RPLND to remove lymph node.

          Comment


          • #6
            I'm in the process o waiting three month for a rescan to clear up some questions but I'm starting at half the size and only seminoma. I'd feel better for you with two months but I'm not one who likes waiting. If it's one too soon it may not be clear yet.

            On recovery... From the time chemo started to the point I could run as fast as before was 363 days for me. That does include a pulled hamstring followed by rapid improvement after that date. I think most would recover much faster than my measurement method indicated for me.

            Keep us informed.
            Greg
            2011: July 7 - Right I/O, Aug 4 - Seminoma - 2.7cm - Surveillance
            2012: July 30 - Relapse, 3cm paraaortic node, blood work normal.
            Nov 6th - Finished BEPx3
            Dec 10th - One year post chemo all clear

            Comment


            • #7
              Surgery?

              My Onc also suggested possibility of having surgery (similar to RPLND but not as severe) IOT remove the suspect area and would be true indication to see if cancerous or not.

              I'm pretty anxious with this whole situation, after emailing Dr. Einhorn, he said if it is truly a suspicious node in that area, waiting 3 months for a follow up scan is too long.

              What other options do I have?? Maybe as Greg said, 2 months would be better for follow up??

              Stressful and Confusing times I find myself in!
              22yr old from Australia

              Jun 13 - right I/O
              - 100% EC with no LVI - Stage 1
              Jul 13 - Surveillance
              Nov 13 - CT scan - 23mm 'abnormality' in para-aortic region (mostly solid)
              - PET scan confirmed recurrence
              Dec 13 - 3 x BEP started
              Jan 14 - Changed treatment to 4 x EP due to lung problems
              Feb 14 - Follow up CT scan showed 20mm 'abnormality' (mostly cystic/fluid - less solid)

              ............Scheduled in for PET scan and most likely RPLND to remove lymph node.

              Comment


              • #8
                Did Dr. Einhorn suggest a length of time for another scan?
                2011: July 7 - Right I/O, Aug 4 - Seminoma - 2.7cm - Surveillance
                2012: July 30 - Relapse, 3cm paraaortic node, blood work normal.
                Nov 6th - Finished BEPx3
                Dec 10th - One year post chemo all clear

                Comment


                • #9
                  Originally posted by ColdCanadian View Post
                  Did Dr. Einhorn suggest a length of time for another scan?
                  He said 4-6 weeks to repeat imaging studies and tumour markers. I am also having a PET scan late next week to give a bit more indication and to see if the abnormality was affected due to a virus at the time.

                  I also might see if I can get a hold of the films and send a picture to Dr. Einhorn of the suspect area.

                  I will let you know how it all goes... It's just hard waiting knowing cancer could be in me right now.
                  22yr old from Australia

                  Jun 13 - right I/O
                  - 100% EC with no LVI - Stage 1
                  Jul 13 - Surveillance
                  Nov 13 - CT scan - 23mm 'abnormality' in para-aortic region (mostly solid)
                  - PET scan confirmed recurrence
                  Dec 13 - 3 x BEP started
                  Jan 14 - Changed treatment to 4 x EP due to lung problems
                  Feb 14 - Follow up CT scan showed 20mm 'abnormality' (mostly cystic/fluid - less solid)

                  ............Scheduled in for PET scan and most likely RPLND to remove lymph node.

                  Comment


                  • #10
                    Originally posted by SimonHT View Post
                    I met with my oncologist today and essentially although he said the 24mm area in para-aortic region is indeed suspicious, but he said by looking at the films that it is not clear cut, and could in fact be something else...
                    This is the crux of the problem: How much experience does the person reading the scan have with TC? It is a critical question to ask,since if it is TC that has gone from zero to 24mm in three months, it is a *very* fast growing TC. Giving it another 3 months does not seem like a good idea *if* it is TC. If it is *not* TC those 3 months may allow you to avoid chemo you may not need, so it always chinges on the experience of the person reading the scan.


                    Originally posted by SimonHT View Post
                    1) Would there be any difference in terms of cure % whether I have Chemo now, or in 3 months? And if not, isn't it therefore logical I wait 3 months in order to 100% confirm it is cancerous?.
                    Probably not, since even advanced cases can be cured , but the amount of treatment needed to get that cure might change & be more difficult to tolerate.

                    Originally posted by SimonHT View Post
                    2) and is it possible that a virus/infection during the time of the CT scans could have given this abnormal suspicious appearance of 24mm?
                    Pretty much anything is "possible", but "likely" is what you should have asked, I think. Given your history of recent TC & an enlarged node in an area where TC is known to spread to, I believe it is likely you will eventually need chemo, but I'm not a doc.

                    Your PET scan will likely also include a CT scan (they normally do them side by side & the computer merges the images so the doc can see both the actively growing cells AND the structure where those cells are) so your doc should be able to figure out if the area is growing or reducing from that scan, even if the cells don't take up the radioactive sugar solution. If it has gotten larger, then I'd expect chemo will be called for, if it has shrunk, then a bit more waiting might be a good idea.

                    It is a tough call, to be sure, just know that there is close to 100% cure for most guys, & there is no reason to think you will be different.

                    Dave
                    Last edited by Davepet; 11-09-13, 02:04 AM.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

                    Comment


                    • #11
                      While surgery is no fun, you might want to consider it as a way to potential avoid chemo (you will know for sure it is/isn't cancer). Dr. Allaf does this robotically at Johns Hopkins. You can email him and ask questions - he is good about responding.
                      Toni-wife of Jim, age 43
                      8/15/13 Left I/O, CT scans clear
                      8/23/13 Path#1 -U of Rochester: 2cm tumor - 80% EC, 20% Seminoma, No LVI
                      9/9/13 Path #2 - IU - 35%EC, 50% Yolk Sac, 10% Seminoma, 5% Chorio, a Focus of LVI
                      9/13/13 Path #3 - Johns Hopkins - 40% EC, 45% Yolk Sac, 10% Seminoma, 5% Chorio, NO LVI
                      9/30/13 Robotic RPLND at Johns Hopkins with Dr. Allaf - 32 nodes removed. ALL CLEAR!
                      1/6/13 Just shy of 5 months - ALL CLEAR still...

                      Comment


                      • #12
                        Originally posted by SimonHT View Post
                        Hi,

                        As with most people here, sitting and waiting to see your oncologist causes a lot of anxiety! After being diagnosed with 100% EC stage 1, and being on surveillance for 5 months, my latest results came back with the following:

                        Blood work: LDH >400 (AFP, HcG normal)

                        Scans: abnormality (suspect to be lymph node) in the right para-aortic region measuring 24 mm. This was not present previously.

                        My urologist was obviously concerned and sent me to see an oncologist who I see in a couple of days.

                        Am I correct in saying the most typical area for relapse is in the para-aortic region?

                        Also is it unusual for previous scans to not even mention that area then in the space of less than 3 months be a suspicious 24mm node?

                        Also does anyone know if a PET scan is even useful for non-seminomas?

                        Sorry for all these questions but it is assuring to here of people's thoughts/personal experiences...

                        I am a realist and understand the results don't look great but hey, here's hoping for the best!

                        Thanks
                        Simon, EC is very fast spreading, but also melts like butter when BEP hits it. That being said, I would follow to the letter whatever Einhorn suggests. If he says 3 months is too long a wait, then 3 months is too long a wait. Perhaps your dr. can consult with him.

                        Comment

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